Here, in her own words, Sophie talks about her diagnosis, life with Addison's, and being interviewed for the BBC to spread awareness!

Hi! I'm Sophie, I'm 11 and I live on South Uist. I love music, adventures, my family, giving hugs and raising awareness of Addison's disease.

Most people hear about the day I was finally diagnosed with Addison’s disease, but my journey actually started long before that. Looking back now, my body had already been trying to tell everyone that something was wrong.

On Christmas Eve 2023, I became very poorly with what everyone thought was a gastro bug. I had been vomiting, and my sodium level dropped dangerously low to 115. I started having absence seizures, and I was so unwell that I had to be flown by air ambulance from the Western Isles to the Royal Hospital for Children in Glasgow.

I was treated in hospital and eventually became well enough to go home. At the time, everyone thought I had just been extremely unlucky and had reacted badly to a sickness bug.

Nobody knew that it may have been the first major warning that my adrenal glands weren’t working properly.

I stayed unwell in the months that followed. Then, in September 2024, I became ill again. This time, I was admitted to hospital with what everyone thought was croup because I was struggling to breathe. I recovered and went home, but once again, nobody knew that my body might have been giving us another warning.

A few weeks later, in October 2024, my family and I went on our dream holiday to Disneyland Paris. 

I was so excited. We had looked forward to the holiday for such a long time, and I couldn’t wait to see the castle, meet the characters and go on the rides. But during the holiday, I started feeling unwell.

At first, everyone thought it was another sickness bug. I was vomiting and couldn’t eat. Mum and Dad stayed with me in our hotel room, hoping that I would start to feel better after some rest. Instead, I became worse.

I became very sleepy and wasn’t acting like myself. Dad knew that something wasn’t right and called for help. When the emergency services arrived, they checked my blood sugar. It was only 0.3 g/L, which is around 1.7 mmol/L. They gave me glucose straight away and rushed me to hospital. Everyone hoped that treating my low blood sugar would make me better, but it didn’t.

I continued vomiting, and my blood tests showed that my sodium was dangerously low. It was 111 when I first arrived at the hospital, but it later dropped even further to 105. 

Then everything became a blur. I had a seizure. My oxygen level dropped to 78%, and I had to be transferred to the Paediatric Intensive Care Unit in Robert Debre hospital in Central Paris. I was critically ill.

The doctors in France worked hard to find out what was happening to me. They noticed that my skin looked much darker than it should have. It wasn’t just a tan from being on holiday. It was something called hyperpigmentation, which can be a sign of Addison’s disease.

After lots of blood tests and treatment, the doctors finally found the answer. I had Primary Adrenal Insufficiency, also known as Addison’s disease.

What is Addison's Disease?

My adrenal glands weren’t producing enough of the hormones my body needed to keep me alive, especially when I was ill or under stress. I was treated with intravenous hydrocortisone, and slowly I began to improve. But even when I was well enough to leave intensive care, I still wasn’t well enough to simply get on a plane and travel home. A medic had to travel from Scotland to France to bring us back safely, in case anything happened to me during the journey.

When we finally arrived back in Scotland, I still couldn’t go straight home. I spent another week in the Royal Hospital for Children in Glasgow, where the doctors continued to look after me and made sure my new medication was working properly. 

My family also had to learn about hydrocortisone, fludrocortisone, stress dosing, emergency injections and how to recognise an adrenal crisis. Only after that week in Glasgow was I finally well enough to travel home to South Uist.

What had started as a dream family holiday had ended with me in intensive care in another country, being diagnosed with a lifelong condition and my family having to learn how to keep me safe.

Getting home didn’t mean that everything went back to normal. We had to adjust to a completely new life.

I now take hydrocortisone several times every day and fludrocortisone once a day. When I am ill, injured, very stressed or doing something that puts extra strain on my body, I sometimes need extra hydrocortisone. My family also carries an emergency hydrocortisone injection in case I become too unwell to take my medicine.

Living with Addison’s disease isn’t always easy.

There have been more hospital stays, lots of appointments and times when we have all felt scared. Sometimes it can be hard knowing whether a symptom is something small or the beginning of an adrenal crisis. But Addison’s disease doesn’t stop me from being me.

I still love going on adventures, spending time with my family, making videos, dancing and dreaming about what I want to do in the future. I have also learned that I am much stronger than I ever realised. My family and I have travelled to attend ADSHG events, practised the emergency injection and met lots of people affected by Addison's and all types of adrenal insufficiency.

Be part of our community!

I got to be on BBC Gaelic News to talk about having Addison’s disease. I was a little bit nervous before we started, but I actually loved doing it and it was really fun!

They filmed me doing things I enjoy, like going on my skateboard and riding my bike, which was probably my favourite part. It didn’t really feel like I was being interviewed all the time because everyone made it fun. ADSHG were part of the interview as well, and an article was published on BBC Naidheachdan, the BBC’s Gaelic-language news service website, which you can read here.

Shona, the presenter, was so lovely and friendly. She helped me when I was talking about Addison’s and made it really easy for me to explain what it is like having it and how it affects me.

I’m really glad I did the interview because lots of people don’t know what Addison’s disease is. I hope that by talking about it, more people will understand it and it might help other children who have Addison’s too. I felt really proud when I saw myself on the news!

I hope that sharing my story helps more people understand the signs of Addison’s disease, especially in children.

Looking back, there were warning signs before I was diagnosed. I had already become dangerously ill with low sodium, and my family had already been through an emergency air ambulance transfer. But Addison’s disease can be very difficult to recognise because its symptoms can look like lots of other common illnesses.

If my story helps even one child get diagnosed before becoming as critically ill as I did, then sharing it will have been worth it.

Because no child should have to become dangerously ill before getting the diagnosis and treatment that could save their life.

My parents have alarms set on their phones, and I have reminders too on my watch. We always carry my tablets with us so I never miss a dose.

I wear a MedicAlert bracelet every day and carry an emergency steroid card with me wherever I go. I also have the ADSHG keyring attached to my bag. In the car I have a seat belt cover that states I have Addison's disease and I am steroid dependent.

We always carry my emergency hydrocortisone injection kit with us. My family know when and how to use it if I have an adrenal crisis or can't take my tablets.

Follow Sophie's journey on Instagram @sophies.addisons.journey

Read BBC Gaelic News article, Addison's Disease: "She wasn't there...she was looking through me"

Watch Sophie's BBC interview on YouTube

Children and young people

Since liquid hydrocortisone (hydrocortisone sodium phosphate), was discontinued in May 2026, the only form of hydrocortisone available in the UK is hydrocortisone sodium succinate powder which must be reconstituted with sterile water before injecting. 

These medications come in separate vials (shown left).  The process to prepare the injection is fiddly, with multiple steps.

Our community have been asking us about ACT-O-VIAL® hydrocortisone (shown right) as an alternative.  It isn't currently licensed in the UK, though it is licensed in the EU. Its main advantage is that it is generally considered quicker to prepare than the standard UK hydrocortisone sodium succinate injection, which can make a life-saving difference in a time-critical adrenal crisis. 

Here we explain what ACT-O-VIAL® is, what "unlicensed medicine" means, and how it may be prescribed in the UK. This article is intended to support informed discussions between patients and their healthcare teams.

What is Act-O-Vial®?
What does "unlicensed medicine" mean?
Can Act-O-Vial® be prescribed in the UK?
How is Act-O-Vial® prepared?
What does it cost, and how quickly can it be supplied?
Next steps
Frequently Asked Questions

ACT-O-VIAL® contains:

The active medicine, hydrocortisone sodium succinate, is the same effective form of hydrocortisone used currently in the UK for the treatment of adrenal crisis. 

The difference is in the design.

Instead of a separate powder vial and water ampoule, both are held together in one dual-chamber vial.

You simply press a plastic activator to release the water into the powder, mix, and draw up the dose. This means fewer steps to prepare an emergency injection, which can make a real difference if you're unwell, in pain, alone, or have difficulty with dexterity. 

ACT-O-VIAL® is used in a number of countries but does not currently hold a UK medicines licence (Marketing Authorisation).

An unlicensed medicine is a medicine that does not currently have a UK Marketing Authorisation.

This does not mean that the medicine is unsafe, experimental, or unavailable elsewhere. ACT-O-VIAL® is a well-established product, already licensed for use in the EU and elsewhere. It simply doesn't yet have its own licence (Marketing Authorisation) in the UK. 

However, UK regulations allow healthcare professionals to prescribe unlicensed medicines when they believe this is necessary to meet the clinical needs of an individual patient, and this cannot be met by a licensed alternative.

The use of unlicensed medicines is a normal and established part of NHS practice. Doctors across the NHS prescribe unlicensed medicines every day, in fields like children's medicine, palliative care, and rare diseases - whenever they judge it's the right thing for a particular patient. 

Potentially, yes, but the decision rests with the healthcare professional responsible for your care, for example, your endocrinologist or GP. Factors that may be relevant to discuss with your healthcare professional include:

Everyone with adrenal insufficiency and at risk of adrenal crisis would benefit from a simpler emergency injection process. But people in the groups above may have a particularly strong case to discuss with their clinician.

Research supports that patients who inject themselves early, rather than waiting for paramedics or A&E, are less likely to need a hospital admission. This shows the benefits not only in health outcomes and confidence for the patient and those who support them, but also for the NHS in terms of costs related to preventable hospital admissions.

One of the reasons many patients prefer ACT-O-VIAL® is that the sterile water and hydrocortisone powder are stored together in a dual-chamber vial.

With the current UK process, you need to remove the powder bottle cap, snap open the water ampoule, draw up the water, mix it into the powder, and draw up again to inject. ACT-O-VIAL®  simplifies this - pressing the plastic activator releases the diluent straight into the powder bottle. Once mixed, you simply draw up the solution and inject. This means fewer steps overall compared with the standard UK hydrocortisone sodium succinate preparation. 

Watch our YouTube video demonstrating how to give an emergency injection of hydrocortisone using an ACT-O-VIAL® bottle and a retractable safety syringe in the event of an adrenal crisis.

It is narrated by Professor John Wass, Chair of our Clinical Advisory Panel, with injection demonstration performed by consultant endocrine nurse, Phillip Yeoh. 

Because it's imported, ACT-O-VIAL® currently costs more than the standard UK-licensed hydrocortisone sodium succinate powder and diluent presentation, and has a longer procurement (supply) time.

Indicative supplier pricing obtained by ADSHG in 2026 suggests a cost of approximately £84.20 per pack of 10 × 100mg ACT-O-VIAL® (equivalent to around £8.42 per vial), with additional delivery charges potentially applying to smaller orders. Supply is typically arranged through specialist importers and may require a lead time of approximately 7–10 days, depending on availability in the source country.

Prescribers should balance procurement and cost considerations against the individual clinical needs of the patient and any difficulties the patient may experience with the preparation of the standard emergency injection.

Two importers we have reached to; Genetech Healthcare and Target Healthcare, who have confirmed they are able to source ACT-O-VIAL® for UK prescribers. 

Costs and availability are subject to change, and prescribers or pharmacies should obtain current pricing directly from the supplying importer before prescribing.

1. Talk to your healthcare team. This can be your endocrinologist, endocrine nurse or GP.

2. Explain your situation. Let them know why ACT-O-VIAL® may better meet your needs, bearing in mind the priority groups mentioned above. Highlight any concerns about preparing an injection during an adrenal crisis, as well as your previous experiences of adrenal crisis.

3. Your healthcare professional considers your request. They will decide whether there is sufficient clinical justification for prescribing an unlicensed medicine. They may provide the prescription during your appointment, or they may seek advice from:

4. The prescription is provided. This can be done by your GP or endocrinologist. It will appear as: "Solu-Cortef ACT-O-VIAL® 100mg powder and solvent for solution for injection vials (imported)", on their system. They will decide with you how many vials to prescribe.

5. The medicine is sourced. It can be helpful if, at the time of prescribing, your healthcare professional notes on the prescription for your pharmacy that confirmed importers include Genetech Healthcare, Target Healthcare, and Alcatia Pharma. Your pharmacy will then liaise with these importers (more details below).

The Department of Health and Social Care has advised that specialist importers have previously confirmed that they can source unlicensed hydrocortisone sodium succinate ACT-O-VIAL®, including:

Target Healthcare: Currently importing from Australia. Available within around 7 days from order.  Can be ordered as 1 vial or more. Costs not shared at the time of publishing.

Genetech Pharmaceuticals: Currently importing from Canada.  Available within 7-10 days.  Costs quoted as £84.20 per pack of 10 × 100mg Act-O-Vials at the time of publishing (Aug 2026).

Alcatia Pharma

Availability can change over time and may depend on supply in countries where the product is licensed. Your prescriber and pharmacist will identify the most appropriate route for obtaining the medicine.

Your pharmacy may not have used these importers before, so they may have to open a new account with them. They may need to get approval within their own business to do this, which may make the process longer.

ACT-O-VIAL® offers a simpler, faster way to prepare emergency hydrocortisone, something that can make a real difference in a time-critical adrenal crisis. If you think it could help you, the first step is to speak to your endocrinologist or GP about whether prescribing this unlicensed medicine would meet your clinical needs.

When making that decision, prescribers should weigh procurement and cost considerations against your individual clinical needs, including any difficulties that you may have preparing standard emergency injection kits.

We'll continue to update this page as availability, pricing, and guidance evolve.

This article is intended for information only and does not replace personalised medical advice. Patients should always discuss treatment decisions with their healthcare professional.

Discontinuation of liquid hydrocortisone

Emergency hydrocortisone injection

Adrenal crisis emergency management

More questions? Become an ADSHG member to hear more news direct and to chat with others with adrenal insufficiency and Addison's on 'The forum', our online community platform.

Unfortunately, we are regularly contacted by members of the adrenal insufficiency community who share an experience they have had where they felt, or were at actual risk of harm.

Very regretfully, the ADSHG does not have the resources to get involved in individual patient safety situations because we are a small team trying to balance working towards all the goals of our community.

However, there is some general support we can offer: 

We would direct you to our webpage on raising concerns about your NHS care. This explains how to make a complaint about the care you are currently receiving, or have received in the past. It also shares the details on Martha's rule, which supports you in raising immediate concerns at the time you are receiving care. This page will help you to understand the process, stay empowered and access support.

Why Complaints Matter: People with rare and invisible conditions like adrenal insufficiency are sometimes misunderstood or overlooked in healthcare settings. This can be distressing and even dangerous. Speaking up helps improve care - not just for you, but for others too.

Following an A&E experience or an emergency admission, we always recommend contacting your own endocrinologist, particularly if the care/treatment has not been to standard, in the hope they can raise it with their A&E colleagues.

You can read more about making a complaint by clicking on the link below;

Raising concerns about your NHS Care

We are aware that there may be patterns and learnings to be taken from collecting information on experiences that have been below standard, and looking for similarities or 'themes'. This is a way that we can better understand what is happening to patients and focus on the areas that need support to change and improve.

For this reason, we have created a Patient Safety Event form to allow people to anonymously share their experience with us.

It is an anonymous online form, created by the ADSHG, that asks a series of questions about the healthcare experience you had that made you feel at risk or where you were at risk.     

Each form is to record a single patient safety event. If you have experience with more than one event that you would like to share, then each event would need to be recorded on a separate form.

We have compiled and tested our Patient Safety Event Form with volunteers who have experienced a patient safety event.

Complete the Patient Safety Event form

We are only able to collect Patient Safety Event information for people who:

Also where;

We know that it can be difficult, emotional and time-consuming to revisit the experience you had. Completing this form is entirely optional. If you are limited on energy or time but still want to share your experience, you can just complete the 'required' questions,and leave the rest.

If you are dealing with emotional trauma relating to your healthcare experience, our Rareminds Webinar recording might be helpful, but you could also go to your GP to ask about Talking Therapies or read the NHS webpage on Talking Therapies, to look into whether EMDR therapy may be suitable for you. EMDR is explained on the NHS page under the header ‘Types of talking therapy’.

We have created this form because every recorded event helps us to fight to improve patient safety for people with adrenal insufficiency and Addison's disease.  

Complete the Patient Safety Event form

Dynamic Therapeutics' mission, which the ADSHG are delighted to support, is to provide accurate and well-validated technology for the measurement of hormone rhythms, improving the lives of patients across the world. Research already completed has shown that 24-hour U-RHYTHM hormone profiles, particularly overnight, help clinicians to rapidly and reliably diagnose and improve the treatment of hormonal conditions, which include Addison's disease and other causes of adrenal insufficiency. They recognise that every patient is different and deserves individually tailored therapy.

Dynamic Therapeutics is seeking financial support to fund UKCA marking of the U-RHYTHM device, which will enable it to be used more routinely in the clinic. The ADSHG is thrilled to support the work of Dynamic Therapeutics by approving £20,000 funding towards these costs.

Research link: Links to research performed using the U-RHYTHM device can be found on Dynamic Therapeutics website.
Journal of Internal Medicine: Circadian and ultradian rhythms: Clinical implications

We catch up with Professor Stafford Lightman, inventor of U-RHYTHM, for the latest on the device's journey from research tool to a device your own clinical team can soon access. We find out what it means for U-RHYTHM to hold a UKCA mark, why cortisol dosing isn't one-size-fits-all, and how this research could shape the future of adrenal insufficiency management.

Please can you tell us about the U-RHYTHM device and why it is important for the adrenal insufficiency community?

The U-RHYTHM device is a wearable sampling device that collects biochemicals (e.g. hormones) from the fluid in your body tissues every 20 minutes. The wearer can go about their everyday life and sleep during sampling. The stored samples are sent off for state-of-the-art analysis to reveal a very accurate and reliable 'dynamic' 24-hour biochemical profile. In terms of the adrenal insufficiency community, as far as we are aware, U-RHYTHM is the only device that can accurately assess cortisol dynamics over the whole day and night in real life!

One common misconception about cortisol is that it is a hormone that just responds to stress. In fact, it is an anticipatory hormone that - in good health - is secreted in anticipation of your body's needs. Thus, prior to, and during the early hours of sleep, when your body is relatively quiescent (at rest), levels of cortisol are very low. But later in the night, in preparation for waking, there is increased secretion of cortisol getting into the body, and particularly the brain, ready for activity the next day. This allows you to wake up refreshed and ready to go.

It is the failure of this early morning rise of cortisol that is a major cause of the apathetic (flat or sluggish) and generally unwell feeling of many patients who only take their first cortisol medication after awakening. Interestingly, this does not occur in everyone, and it is likely that this is due at least in part to the fact that some people still have residual function of their adrenals and thus have their own bodies attempt to increase cortisol in the morning to a sufficient level to avoid symptoms.

The only way we can tell if there is an abnormal rhythm of cortisol in subjects on treatment for adrenal insufficiency is to measure throughout the day, and most particularly during sleep at night. If we can confirm a long period of low cortisol levels overnight, only increasing after the morning dose, then the patient should discuss with their endocrinologist whether they should change the timing or the type of cortisol replacement.

I think it is important to emphasise that every patient is different, including in their ability to absorb and break down their cortisol replacement therapy. There is no one replacement regime that fits all patients, and in an age of personalised medicine each patient deserves to know how their body deals with their replacement therapy.

Yes, and in some ways even more so. We must not be lulled into believing any one treatment regime suits everyone. Different people will absorb and metabolise these preparations differently, and what may be suitable for one person is not necessarily suitable for another. Again, I believe that patients deserve to see how their bodies deal with the replacement therapy they are given.

I could talk all day about how different people respond to different types of stress. This is such a complex question, and what one person perceives as a stressor, another might find quite relaxing. For instance, I quite enjoy talking at conferences to large audiences, but I fully understand others may find this very stressful. Maybe I should talk about this another day!

With respect to exercise, this is a very interesting question. Strangely, with the exception of the response to extreme military levels of exhaustion stress, we really do not have a good understanding of the normal physiological response to, say, an energetic football match or a long-distance cycle ride. The reason for this, of course, is that it is next to impossible to take multiple blood tests during these activities. My hope is that the use of U-RHYTHM will allow researchers to investigate what the optimal physiological response to exercise is and use this to help us improve our treatment of exercising patients with adrenal insufficiency.

The current situation for helping patients with adrenal insufficiency is very frustrating. I get multiple emails from patients in the UK and indeed from all over the world asking me how they or their clinicians can access U-RHYTHM to help improve the management of their condition. What I would like to do is either inform them of a local endocrinology unit/specialist who would be able to perform a 24-hour profile, or to provide them with the details of how their department could obtain a system for clinical use.

Unfortunately, U-RHYTHM is currently a research-use-only device, only to be used in research studies, so the only way a patient can get a profile is to find a centre that is recruiting patients for a specified research project. This is unlikely to be of use to the great majority of patients with adrenal insufficiency.

The UKCA mark (UK Conformity Assessed) is the confirmation that demonstrates that a medical device meets UK regulatory requirements. Once U-RHYTHM is UKCA marked, it can be used in a clinical setting for sample collection over 72 hours. Samples can then be used to help inform the diagnosis, management and treatment of adrenal insufficiency.

Once we have the UKCA mark, we can make the U-RHYTHM system available for purchase by any hospital/clinic that requests it. This is why the £20,000 funding by the ADSHG towards the UKCA costs is so important. Thank you for your support!

If you're a clinician and would like more information on the U-RHYTHM device, please get in touch with us by emailing info@dynamic-tx.co.uk

Use of U-RHYTHM in the NHS will most likely be dependent on local funding decisions. These will be sensitive to patient support group pressure, which is why ADSHG community support is so valuable! A combination of clinician awareness and patient pressure on NHS (or private) purchasing will increase the likelihood that the U-RHYTHM system will be available in your local outpatient setting, to improve the quality of life of patients with adrenal insufficiency.

Please follow us on LinkedIn, visit our website, or contact us on info@dynamic-tx.co.uk if you have any questions or suggestions!

The ADSHG is delighted to welcome Dr Susana Paul-Stols from Dynamic Therapeutics to our Manchester Get-Together on Saturday 26 September 2026, to share the latest updates on the device and to answer questions from the audience.

We will continue to share updates with ADSHG charity members as work on U-RHYTHM continues. Join our charity to receive these updates through our monthly member emails, 'Keeping You Posted' newsletters and magazine.

All grant applications received by the ADSHG go through an evaluation process by a sub-committee of the board of trustees, and are marked against pre-determined eligibility criteria. For further information on eligibility for this grant or others, and for all the ways that the ADSHG can support researchers, including patient engagement and letters of support, please visit our Research page.

ADSHG Supports Research

Thank you to our members, fundraisers and donors: your support allows us to commit to awarding financial grants such as this one, that directly impact the future care of people with all types of adrenal insufficiency, including Addison's disease.

Read on for the next steps on what to do if you find yourself in this situation, and how we can support you.

In the UK, there are only a couple of medication wholesalers and fewer than 40 warehouses serving the whole country. When your pharmacist says they are unable to order items, it’s understandable to assume there is a shortage. Usually, however, it is the local depot that has run out – there could still be a supply somewhere else in the supply system. Your pharmacist won’t stockpile items,and will most likely order items frequently instead. Often, it’s only when the pharmacy puts in an order that they discover there is a supply problem.

Sometimes there’s a surge in demand

When other medications are in short supply, alternatives are highly sought after. This can lead to knock-on shortages of alternatives.

Occasionally, it’s about issues with manufacturing the medication

There are many reasons that manufacturers might stop making a medication, temporarily or otherwise. Ingredients may be in short supply or suddenly too expensive. Legal or licensing problems may also halt production. India and China are the main countries supplying raw pharmaceutical materials.

To enable you to follow the Sick Day Rules, it is necessary to always have 3 months reserve supply of your essential steroid medicine. This is to ensure you have enough to keep you safe through an episode of illness which requires increased dosing, or to cover if there is a shortage of your medicine. 

The provision of a reserve supply of steroid medication is standard practice for the prevention of an acute adrenal crisis. 

For further information to share with your GP or prescriber, visit our Prescription Frequency article and/or use our Prescription Frequency letter template to send to your GP.

Prescription frequency letter template

Hydrocortisone

In the event of being unable to access hydrocortisone tablets, patients with steroid dependency should be able to swap temporarily to prednisolone tablets. Prednisolone has a longer half-life in your body than hydrocortisone, and many people with steroid dependency will be able to stay well just taking one morning dose of Prednisolone.

For more detailed information on cortisol replacement medication, including doses, times of day to take your medication, and which medication is right for you, visit our medication page.

Medication

In the event of a temporary interruption to the fludrocortisone supply, you should immediately start to add extra salt (normal table salt, sodium chloride) to your diet, or some people prefer to take electrolytes. However, the recommendation is to eat real table salt, not ‘Lo salt’, as the low salt products contain potassium that will not help your salt (sodium) deficiency.

Signs that you need more salt include (but are not limited to): light-headedness, feeling constantly washed-out, or weak, cramps and spasms in the legs, lower back and abdominal pain.

Normal dietary advice to avoid too much salt in your diet does not apply to people with primary adrenal insufficiency (Addison's disease), and these important symptoms and feelings should not be ignored. If you continue to feel unwell, increase your hydrocortisone dose immediately and contact a medical professional.

Why Salt article

More information on Fludrocortisone

Following the discontinuation of liquid hydrocortisone (hydrocortisone sodium succinate) in May 2026, there is currently just one form of hydrocortisone (powder) available for the emergency injection: ‘Hydrocortisone sodium succinate 100mg powder for solution for injection or infusion 1x2ml - vial with diluent'

The ADSHG are advocating for, and working with the DHSC to facilitate an improved emergency injection process for the future.  

Our advocacy

Become a member

Emotional Wellbeing

Emergency hydrocortisone injection

We have a wonderful, engaged and passionate group of members in the Republic of Ireland, who we have always referred to as 'Addison's Ireland'. This section of our website captures information relevant to this valued group of members.

As a result of Brexit in 2020, there have been some legislative and regulatory changes that dictate how charities based in the UK must act, as regards their operations in the Republic of Ireland (ROI). 

We have been fortunate to have enjoyed wonderful meetings in the past in the RoI, but in 2024, we were required to take legal advice and, unfortunately, were advised to formally withdraw our operations from the Republic of Ireland. The Pituitary Foundation UK and other charities previously working across the UK and ROI have been similarly affected.

Rachel Bracken, our longstanding Ireland co-ordinator, who is pivotal to the development of a new Irish patient support group commented: 

As you may know, due to Brexit, ADSHG being a UK charity can no longer fundraise, lobby or host official charity meetings in the Republic of Ireland. The Pituitary Foundation UK is similarly affected. Therefore I, and a few other members of ADSHG, have joined forces to support our Addison's Ireland members. 

We received tremendous support as ever from the ADSHG, especially Dom (Chair of Trustees), and Katie Harris (Trustee), who will assist us as we go forward in our new Addison’s and Adrenal Support Ireland charity endeavour. 

We will always have the excellent medical literature from the ADSHG but once we have the Irish charity registered, we can also join with other Irish charities such as Rare Diseases Ireland and Health Research Charities Ireland, which we could not do as a UK charity.

We are delighted to announce that as of 2026, we are up and running as a Company Limited by Guarantee (CLG). Now a lot more paperwork lies ahead but watch this space! If you could support us in any way please get in touch.

Addison’s & Adrenal Support Ireland CLG Board – Clockwise from Top: Rachel Bracken (Chair), Rosemarie Kennan (Secretary) & Patricia Hinch (Treasurer).

Addison's and Adrenal Support Ireland are evolving continuously. 

Already a CLG, they have a logo and now an email contact address for those wanting to get involved, or needing support.

Contact Addison's & Adrenal Support Ireland

No matter where our members are based, we are united by the same values and shared purpose. As a charity, we work together to support people living with Addison's disease and adrenal insufficiency, strengthen connections within our community and the wider endocrine medical profession, raise awareness of these rare conditions and their impact, and champion improvements in treatment and research that can enhance the quality of life for those affected.

We enjoy great relationships with both members in the Republic of Ireland (RoI), and with medics and health professionals alike.  Whilst there are obvious differences between the UK and the RoI health service, many of the principles of the work we do are as applicable in Ireland as they are in the UK.

We are here to support the development of Addison's and Adrenal Support Ireland, and are so excited to see it grow.  We are very grateful for, and inspired by the passion and motivation of the key founders of the charity, and we wish them every success!

Living Well is a free group self-management programme. As living with a long-term health condition can be challenging, the Living Well programme supports you to develop the skills which will help you to live well with a long-term health condition(s). The Living Well programme has proven to be effective in helping people to manage their health conditions better.

Since then, Finnley has been working towards returning to the game he loves, while Stacey has focused on raising awareness of Addison's disease and supporting the ADSHG through fundraising and advocacy. Their story highlights the realities of living with a lifelong condition, the importance of early diagnosis and the strength of family support. 

When Finnley left Warrington for America in August 2025, he was doing what so many young footballers dream of: taking a brave step towards the future he had worked so hard for. At just 18, he moved from Warrington, Cheshire, to New York after being offered a football scholarship, leaving behind his family and girlfriend to chase the opportunity of a lifetime. Although frightened and anxious, it was a dream he had always had.

His first season proved exactly why he had taken that leap. Playing for FLCC, Finnley helped his team win the regional championship and finish third in the state, while earning individual honours as both an All-Region First Team Player and an All-Conference Team Player. He was building momentum, confidence and a future in the game he loves - until becoming unwell stopped him in his tracks.

In December 2025, Finnley became critically ill. After days of doctor and urgent care visits in the US, he was rushed to hospital, and spent five days in an ICU after suffering an adrenal crisis - a life-threatening complication of Addison’s disease. His sodium and cortisol levels had dropped so low that doctors were astonished that he was still conscious, warning him that he was close to a seizure. 

Three or four weeks before the crisis, I started struggling to breathe. I thought it was just a chest infection as I was playing in -15 temperatures, so I carried on, taking paracetamol and ibuprofen to ease the symptoms. But over the next few weeks, things got worse. I was exhausted, my breathing became more difficult, my legs felt heavy, and my muscles and joints were sore. I could only train in short bursts and play around ten minutes in matches before my body just wouldn’t function. Looking back, I don’t know how I played and scored two goals at Nationals.

I kept telling myself I was run down with physical fatigue from a tough season, but in the final week I declined quickly. I felt dizzy, had to sit down after walking short distances, lost my appetite, started being sick, had muscle fatigue and was constantly thirsty. At my worst, just before I was admitted to hospital, I felt close to passing out and started seeing black spots and blurred vision.

My teammates were brilliant. They helped me get to the doctors and urgent care when I could barely walk, and when they saw how quickly I was going downhill, they contacted my parents. My mum and dad spoke to my coaches and support network in America and pushed for me to be taken to hospital urgently.

Once I was in hospital, doctors found my sodium was critically low and told my parents I needed ICU care so it could be raised slowly and safely to avoid brain damage. I was put under 24-hour watch. I had lost nearly a stone in weight, was hallucinating, slurring my words, and my legs were in constant spasm. I was exhausted!

I was diagnosed with severe hyponatremia, Addison’s disease, and rhinovirus. My notes stated I was in severe organ system failure. Over five days, my numbers slowly began to improve, and after a visit to a specialist in Rochester and meetings with college, my parents brought me home to the UK. I’ve had to put my football career and life in America on hold while I adjust to this new reality.

The impact has been life-changing. Finnley’s dream is still to return to the level of football he was playing in the States, but he now must balance that ambition with the demands of a serious lifelong condition.

Addison’s disease brings challenges, including chronic fatigue, muscle fatigue, muscle weakness and spasms, and the constant need to manage stress on the body. For Finnley, that means listening carefully to what his body is telling him and taking additional steroids when needed during physical or emotional strain, known as 'Sick Day Rules' - from intense training sessions and match days, as well as the psychological pressures and stresses that life presents. Moving overseas independently, being one.

"Despite everything I went through, I returned to the pitch and gym in March, just three months after coming dangerously close to losing my life. Step by step, I began rebuilding my weight, strength and muscle mass, testing what my body will now let me do in its new state. I must manage my medication carefully to make sure I have enough cortisol for demanding physical activity, whether that means electrolytes or extra steroids.

When I became unwell, I lost a lot of weight and muscle, which caused extreme soreness. I have slowly worked back into a consistent training plan with my team in America, which I now follow in the UK when I am not unwell or dealing with the fatigue. I also joined a team back home to rebuild my fitness, confidence and see how my body copes. Some days I can train intensely and feel fine, just like before, but the next day it can completely wipe me out and leave me needing sleep and rest. As an athlete, it is difficult not being able to monitor how much cortisol my body has used, so I must really listen to how I feel. I can have good weeks where I train hard every day and feel fine, but it changes from week to week.

Advice on exercise & adrenal insufficiency

Other challenges I have faced have involved getting additional medication from Drs due to my need in frequent updosing and them not understanding this necessity. Working out how much medicine to take and at what point, I rely a lot on my Mum for this. Remembering to always carry my medical bag, I have forgot it on a few occasions.

In March, I was also diagnosed with coeliac disease, another autoimmune condition. Unfortunately, being 'glutened' can pose serious health risks because of my Addison’s. I am now learning to manage my diet alongside Addison's, athletic training, medication and the mental strength I need to keep driving forward.

After such a traumatic experience, Finnley’s mum Stacey was determined to turn the family’s ordeal into something positive. On Friday, 15 May 2026, she hosted a fundraising event at Alford Sports & Social Club in Warrington, with the aim of raising £6,000 in aid of the ADSHG.

The evening brought the community together with live entertainment from singers Jake Liken and T3, drag performer Kiki Inferno, International DJ Holly Jay and a memorable ‘Full Monty’ performance from five local lads, supported in rehearsals by Stacey, who is a dance teacher.

The family raised an incredible £7,957 at the event, plus a further £1,060 through a raffle organised at Stacey’s dance school - bringing the total raised to an outstanding £9,017!

Our fundraising page

For Stacey, the mission is deeply personal. “I just want my boy to be safe forever,” she said. Her hope is to raise awareness of Addison’s disease while supporting medical research, development of monitoring equipment and improved understanding of the condition.

Finnley’s sister and some family friends have since taken part in a cortisol saliva research project at Alder Hey in Liverpool, while Stacey has enquired about becoming a trustee of the charity. For Stacey, it is a way to turn fear into purpose as Finnley prepares to return to his football life in America - a step that is both brave and deeply emotional for the whole family. “It was hard enough when he left home last year, and his health was fine,” Stacey said.

For Finnley, the goal remains simple: to get back to doing what he loves.

Just eight months after diagnosis, Finnley is working hard to rebuild his physical strength and return to the player he was before illness interrupted his journey. There are now new limitations to manage - medication, sudden drops in cortisol, fatigue and the fear that comes with living so far from home. But his bravery, resilience and determination are stronger than ever, and his parents couldn’t be any prouder of him.

Although returning to America feels frightening, Finnley is adamant to do it - not to let Addison’s disease rule him, but to prove that he can live alongside it and stay in control.

For anyone newly diagnosed, you’ve just got to stay strong. Don’t let it affect your mentality - keep that mindset and motivation. Build your confidence in managing and assessing the disease every day, so that you can get back to doing something you love.

I take steroid tablets four times a day and use alarms and alerts on my phone to remind me. I also rely on my parents and girlfriend. I also take Fludrocortisone once a day.

I carry an emergency injection kit in a small bag that stays with me everywhere I go. Inside are additional tablets, electrolytes and salt pouches, all there to help keep me safe in case my body comes under sudden physical or mental stress.

I wear a medical wristband and keep key medical information on a tag which is attached to my medical bag so that, in an emergency, others can quickly see my condition and the medication I need to survive. I also carry a medical card in my wallet and a documentation folder with ADSHG information booklets for medical professionals, plus letters from my specialists explaining why I must always carry medication, sharps, and gluten-free food when attending events or travelling. All of this helps keep me safe.

Listen to Stacey's radio interview with MIX56 breakfast Show.

Read Stacey's magazine article in the Warrington Guardian.

Since 2020, marathons, long-distance walks, school enterprise projects and even a 90th birthday celebration have brought together family, friends and the wider community to raise vital funds and awareness for ADSHG. Here, Keeley shares her diagnosis story and how the charity's support inspired her family to give back.

In July 2020, I was diagnosed with Addison's disease. Rather than answering one question, it seemed to answer hundreds. Suddenly, all those little moments throughout my life that had never quite made sense - fainting after knocking my funny bone, unexplained stomach upsets on race days, sudden waves of dizziness at work events - finally had an explanation.

After the initial shock came determination. I wanted to get back to living life as normally as possible, and the ADSHG played a huge part in making that happen. The wealth of information available to patients, family members, paramedics and healthcare professionals gave me the confidence to understand my condition and take control of it. During my recovery, I read everything I could get my hands on. I was determined that Addison's disease would not stop me from living the life I loved.

As a runner of more than 20 years, setting myself a challenge felt like the perfect way to give something back. In 2021, during the throes of COVID, a friend and I completed the Virtual London Marathon and raised money for the ADSHG. 

Since then, I have completed another two marathons and two ultramarathons. Those experiences have shown me that with the right knowledge, preparation and support, living well with Addison's disease is absolutely possible.

Before long, fundraising became a family affair.

My mum was next to get involved. Having only taken up running at the age of 60, she chose to challenge herself in a different way, completing a 50-mile walk over five days in September 2022, the Yorkshire Three Peaks in October 2022 and a 70-mile walk over seven days in March 2024. Alongside the miles, she organised raffles and coffee mornings, tirelessly raising funds and awareness. Seeing how the charity had helped me navigate my diagnosis inspired her to support the charity that had given our family so much reassurance.

The fundraising effort then spread even further when Acre Street Runners selected the ADSHG as its Charity of the Year. Over twelve months, club members organised bingo nights, raffles, cake sales and quizzes, raising both funds and awareness for the charity.

Perhaps the fundraiser I am proudest of was organised by my youngest daughter, Freya. In 2023, at just 10 years old and naturally very shy, she came home from school determined to put the ADSHG forward for her Year 6 £5 Enterprise Challenge charity vote. This meant standing up in front of her classmates and explaining why the ADSHG should be chosen and why the charity mattered so much to her. Public speaking was something she would normally avoid, but she worked hard on her presentation and delivered it brilliantly. Not only did her class choose the ADSHG, but the entire year group did too. The pupils then raised money through their enterprise project, with all proceeds donated to the charity.

Most recently, my wonderful Grandma celebrated her 90th birthday. Rather than receiving presents, she asked friends and family to make donations to ADSHG instead.

The latest recruits to the fundraising effort have been my football teammates. After more than 25 years away from the sport, I nervously joined a newly formed local women's team. I worried about injuries and how they might affect my Addison's disease, but I quickly discovered an amazing group of supportive women. For Addison's Disease Day 2026, the team turned up to training in tutus and bright colours; each donating £2 and helping to raise more than £70 for the ADSHG.

And so, what began with one diagnosis has grown into something far bigger.

Four generations of one family - my grandma, my mum, myself and my daughter - have all played their part in supporting the ADSHG. Together, we have raised awareness, funded vital work and helped shine a light on a condition that many people still know very little about.

To everyone living with Addison's disease, and to the families, friends and supporters around them: keep sharing your stories, keep raising awareness and keep supporting one another wherever you can. Together, we can continue to improve understanding, support research and move towards innovations that could make living with Addison's disease safer and easier for future generations.

Today, four generations of Keeley's family have supported the ADSHG in their own way. Together, they have raised vital funds, increased awareness and helped shine a light on the realities of living with Addison's disease.

A huge thank you to Keeley and her family for their incredible support over the years. We are truly grateful for everything they have done.

Exercise

Fundraising for the ADSHG

Newly diagnosed or want to learn more?

It is always a challenge to get a year's worth of activity into 60 minutes, but we gave it a good shot! Chair of Trustees, Dom Hargreaves, reinforced the importance of a strong trustee board to undertake the governance of the charity and to lead on strategy, before Cathy Thompson, Director, gave an overview of some of the current projects underway at the ADSHG.

In addition to these ongoing projects, we updated you on: 

To stay up to date on all the latest ADSHG projects and news, join our charity! Membership not only means you can attend special events like this AGM, but provides you with expert support, through our magazine, emails, online forum, and a range of resources to make everyday life easier. 

You'll be part of a supportive community who truly 'get it', have opportunities to support research, and help give our charity a stronger voice. We can't carry out this vital work without your support! So join our mission and become a member today.

Become a member of the ADSHG

We were delighted, and more than a little emotional, to present long-standing volunteer and friend of the charity, Noel Hawks, with the Deana Kenward Award 2026 during the AGM.

The award is just a tiny token of our appreciation for his outstanding efforts over more than two decades since he first joined the ADSHG in the early days of the charity. His contributions have been immeasurable, and he has earned true legendary status! Thank you Noel, for everything!

If you would like to get involved with the charity, explore the link below:

Get involved with the ADSHG

During the AGM, our wonderful members raised questions on key issues, all answered live by our Trustee and Staff Teams. Topics ranged widely, covering:

To watch both the AGM recording and the AC-RESCUE presentation by Dr Ling, become a member today and head over to the online community (forum) for the 'on demand' videos.

Already a member? Log in and click to watch direct!

Below we have provided a list of the resources we signposted to during the AGM, in response to questions asked: 

Working with your GP

We were delighted to welcome Dr Punith Kempegowda, Clinical Associate Professor in Endocrinology at the University of Birmingham and Dr Amanda Ling, QEH Birmingham, to our 2026 AGM, to share with us their research proposal and progress to date.   

Adrenal Crisis (AC) RESCUE is a national project aiming to establish structured surveillance models for endocrine emergencies, beginning with adrenal crisis and hyponatraemia (abnormally low sodium levels in the blood). These are high-risk but under-recognised conditions that are associated with both significant morbidity (suffering as a result of a health condition) and mortality (a risk of death). 

Despite the existence of clinical guidelines for adrenal crisis management (NICE Guidelines for the Identification and Management of Adrenal Insufficiency), there are widespread variations in quality of hospital care across the UK for adrenal insufficiency patients in adrenal crisis, and very little auditing or feedback mechanisms that could help improve the quality and consistency of services.

The RESCUE study seeks to address this gap by: 

This initiative has the potential to improve patient outcomes and support a national learning health system model in endocrinology, and the ADSHG are proud to have awarded this research study the 2026 Professor John Wass Research Grant (£10,000) in June of this year.

Our attendees have given the presentation 9 out of 10 in their feedback: 

First class piece of actionable research, likely to have significant impact. Really well presented

Watch Dr Ling's full presentation, plus the Q&A with Dr Ling and Dr Kempegowda, on demand via our online forum (log-in required). It's a fascinating look at how this research is working to reshape adrenal crisis care across the UK, and you'll also find written answers to the questions members asked online and contact details if you'd like to reach out to the researchers about getting your hospital involved.

Join our Community today!

Thank you for what you do! At times when it's so hard to get a diagnosis, and when emergency care is so precarious, it's good to know you are keeping an eye on things. 

We asked attendees at our AGM to share some feedback with us, and are proud that you have given us an overall rating of 9.4 out of 10 for our online AGM event. 

...A well structured and informative meeting. It gave me a better understanding of some of the issues I have seen in the newsletter and has prompted me to be more pro active, e.g. to write to my GP about 3 month prescriptions and I also intend to write to my MP using your template letter.

"...so well organised with clear and concise presentations by the team. I was interested to hear more about the RESCUE project."

The online format for an AGM feels just right. I thought the RESCUE information and research was fascinating.

"Very professionally run with a strong and interesting agenda"

If you came along to our AGM and haven't had a chance to share your thoughts on the event, please do fill in our feedback form - we'd love to hear from you!

AGM Feedback Form

Edge Hill University, working with the British Society for Paediatric Endocrinology and Diabetes (BSPED), are creating brand new UK-wide resources on sick day and emergency management for children, young people and parents, and they want your help to get it right.

The Addison's Disease Self Help Group is proud to be funding this work, with fellow patient support groups Living with CAH and The Pituitary Foundation.

The work is now at an exciting new stage, and the team need advisors with real experience of adrenal insufficiency to help make sure the resources actually work for young people and families like you.

It's all done online, so no travelling required! You'll be helping to shape resources that could support thousands of other young people and families across the UK, both now and for years to come. 

Find out more

You do not need to have done anything like this before, and you can join in from home (just a few hours of your time!)

Are you a healthcare professional? Download the poster and share it with your patients.

Please contact Lucy Bray on brayl@edgehill.ac.uk for more information.

Get involved!

Thank you, Lucy Bray, Dr Jarod Wong and the whole team, for undertaking this work for the benefit of those living with Addison’s and adrenal insufficiency.

Our children's page (under 11's)

Our Young person's page (11+)

These images show how I view pickled food, based on a typical sickly sweet afternoon tea. At first glance the images appear to be cakes, deserts and very sweet things but in fact it is all made with pickles! I wanted to look at my relationship with salty foods and pickles and how these cravings can compare with people with a sweet tooth.

Lynsey's images are produced to help raise awareness for Addison’s disease.

In May 2019, I had my first suspected near-crisis on holiday in Corfu. The day before, the headaches and nausea started, and by the morning of the flight, I was vomiting and feeling weak. This continued throughout the whole journey and for a few days into the holiday. I eventually saw a local doctor who gave me a steroid injection (my Endo nurse has told me that this could have saved my life!). I assumed it was just a tummy bug.

When I started to feel better and could eat, all I wanted was salty food! The first thing I managed to keep down was salt and vinegar Pringles. At the time, I was in absolute heaven licking the flavoured powder off the crisps! For the next few days, I happily ate feta and olives (I was lucky to be in Corfu), and they just hit a spot I didn’t even know why at the time!

At the end of July 2019, the crazy heatwave we had sent me into near-crisis number two. I tried in vain to keep hydrated through my three days of vomiting, but nothing worked. I made a doctor’s appointment and almost had to cancel it as I could barely get out of bed. The GP couldn’t do a blood pressure reading as it was so low and immediately called an ambulance to hospital for IV fluids. I ended up staying overnight and was given 4 litres of fluids.

It was only after follow-up blood tests that my clever GP spotted something was still wrong with my bloods and told me she was going to test me for Addison’s.

I immediately went online and read as much as I could about the disease, and everything seemed to suddenly make so much sense - all these (so I thought) unconnected symptoms that I’d been having for so long all fit into place! One of my light bulb moments was reading about, amongst other symptoms, the salt cravings.

For the last 2 years, it had been an ongoing joke amongst my family and friends how much I loved pickles (especially salty gherkins in brine and hot pickled peppers). I’ve also had vitiligo for over 10 years, so to read that it can be linked to other autoimmune diseases also made me realise that I must have Addison’s, and I was correct."

I am very lucky that my Addison’s is very manageable and I live a mostly ‘normal’ life with my replacement dose. I rarely have to updose, and I know my symptoms well in case I ever need to. At work, when on very busy photoshoots or long filming days, I sometimes will take a cheeky little extra 5mg of hydrocortisone as a preventative or if I start to feel like I’m flagging. Also, on hot days, I’ll updose my hydrocortisone and have a Dioralyte or add salt to a cold drink.

I go to the gym regularly to do different classes and I take a 5mg updose and extra fludrocortisone before my classes if I ever feel a little tired beforehand and this works a treat. And I always add a teaspoon of salt to my water bottle which I drink during the classes. 

To listen to her body and that the fatigue feeling she might get is usually a low cortisol symptom. Also,to make sure she gets enough sleep and stays super hydrated on hot days. 

Feta cheese, Polish pickles in brine, pickled turnips (the bright pink ones), olives (and the juice) and spicy pickled peppers!

I take my first dose when I wake up along with my vitamins and other meds. I have a reminder alarm on my phone for the rest of the day.

I ordered two bright red pouches with all my details on to store my injection kit in. One is always in my handbag, and the other is in my car. I keep spare hydrocortisone and fludrocortisone in them both, along with some Dioralyte and salt sachets. 

I have a rubber alert bracelet which I never, ever take off.  I also have a seatbelt alert in case I’m ever in a car accident. 

Thank you Lynsey for sharing your story and fantastic photo shoot with our charity and community!

You can find out more about Lynsey from her Instagram: @_lynsey_fox_ and @sheradondublinphoto, as well as her website

Why salt (Addison's disease) 

Medication

Heat and hydration

ADSHG member-only online community

We are thrilled to announce that we are (at last!) able to deliver a selection of our leaflets and publications, sold via our online shop, to EU countries and the United States of America (USA) and Canada.   

Due to the complexities of labelling, packaging and customs regulations when sending items abroad, we have only been offering delivery of our shop items to UK addresses. We have had many requests from people living abroad for us to review this and offer postage to the EU and USA/Canada.

We have had the opportunity to investigate this further with our fulfilment provider, who has shared the delivery costs and procedures. As a result, we are now able to send our printed leaflets and booklets to international addresses.    

Please note that, unfortunately, we are only able to send printed leaflets and booklets, not any of our other items, such as injection kits or medical alert products. This is due to the regulations mentioned above.

It is important to note that our leaflets are all written for a UK audience, and where they reference healthcare professionals or healthcare systems, these refer to the UK only. As such, not everything in every leaflet will be relevant to your country.

Congratulations go to Dr Punith Kempegowda and Dr Amanda Ling from the University of Birmingham, who submitted a research proposal matching the grant's specialist criteria, and focusing on adrenal crisis management in UK hospitals.

Punith is a Clinical Associate Professor in Endocrinology and Senior Fellow of the Higher Education Academy at the University of Birmingham. He is also a consultant at the Queen Elizabeth Hospital Birmingham with special interest in reproductive endocrinology and acute diabetes. His research interests are in providing best possible care to people with diabetes and endocrine conditions and developing innovative and evidence-based programmes to teach and learn from each other.

He is the chair for SIMBA which provides simulation-based learning opportunities and Chair for CoMICs which creates short evidence-based videos on various medical topics, including Addison's disease! He is also the lead for DEKODE, a multicentre cloud-based quality improvement programme for diabetes-related emergencies and PMOS SEVa, a multicentre programme aimed at understanding and improving models of care in PMOS. In his spare time, he is an avid traveller, an ardent movie-goer and a passionate foodie - none of the three even slightly exaggerated if you follow him on his social media.

Amanda is a clinician–researcher driven by curiosity, collaboration, and a commitment to improving real-world healthcare through meaningful, patient-centred research. Her work focuses on the intersection between clinical practice, data insight, and implementation science — particularly in endocrine and metabolic emergencies such as adrenal crisis and severe hyponatraemia.

Currently, she is involved in several national NHS initiatives, including RESCUE and DEKODE, where she coordinates multi-centre studies, develops research methodologies, and works alongside consultants, centre leads, and patient groups to co-design solutions that enhance clinical practice. She also leads Patient and Public Involvement (PPIE) activities and contributes to ethics submissions, grant applications, and academic publications within her implementation network.

Adrenal crisis constitutes a life-threatening endocrine emergency that is largely preventable with timely recognition and appropriate management. While the 2024 release of NICE clinical guidelines on adrenal insufficiency represents a critical step forward, there remains a significant need to understand how these guidelines are implemented in routine practice.

Delayed diagnosis, inappropriate management, and preventable adverse outcomes - including fatalities - persist. Although local audits offer some insights, they are insufficient in scope and consistency to provide the comprehensive, high-resolution data necessary for meaningful analysis at both national and international levels. This restricts our ability to determine the effectiveness of current guidelines, assess variations in clinical practice across settings, or identify targeted strategies for improvement. 

The RESCUE (Rapid Evaluation and Surveillance of Critical Urgencies in Endocrinology) study seeks to address these critical gaps through an integrated, national surveillance and quality improvement programme. The design and implementation of an adrenal crisis surveillance model is a key part of the study: a scalable, cloud-based platform for the pseudonymised collection of clinical data (where personal information that has identifying details has been replaced with artificial identifiers) across multiple NHS sites. 

This model will facilitate real-time benchmarking, highlight institutional and regional variations, and inform the development of predictive tools to support clinical decision-making and resource planning. 

The RESCUE study also recognises an urgent need for robust, evidence-informed educational interventions for patients. Variability in the knowledge and confidence of both patients and healthcare providers concerning the prevention and management of adrenal crises is a recognised barrier to optimal care. Few existing educational approaches are underpinned by behavioural or implementation science, and most lack rigorous evaluation of their impact on clinical confidence, competence, or outcomes. 

Leveraging the SIMBA (Simulation via Instant Messaging for Bedside Application) and CoMICs (Concise Medical Information Cines) platforms, we will co-create and evaluate tailored educational modules for patients, their carers and clinicians. Grounded in behavioural science and implementation theory, these modules will be rigorously assessed using validated tools to measure improvements in knowledge, self-efficacy, and clinical behaviour. 

Through the RESCUE initiative, we aim to establish a national learning health system for adrenal crisis care - integrating real-time surveillance, stakeholder engagement, and continuous professional and patient education. By addressing unwarranted variation, enhancing clinical confidence, and empowering patients, RESCUE seeks to improve health outcomes and strengthen the resilience of the healthcare system for individuals living with adrenal insufficiency. 

This is a vital project because so many people with adrenal failure have difficulties in A&E with getting amongst other things urgent hydrocortisone. This grant will likely increase understanding of this vital period for people with adrenal insufficiency.

We were delighted to welcome Dr Kempegowda and Dr Ling to our online AGM on Saturday, 4 July 2026, to share their progress on the study and to answer questions from the audience. As one attendee said:

First class piece of actionable research, likely to have significant impact. Really well presented.

Want to hear more? Watch Dr Ling's full presentation, plus the Q&A with Dr Ling and Dr Kempegowda, on demand via our online forum (log-in required). It's a fascinating look at how this research is working to reshape adrenal crisis care across the UK, and you'll also find written answers to the questions members asked online.

Join our community today!

We'll continue to share the study's outcomes and recommendations with members through our monthly emails, "Keeping You Posted" newsletters, and magazines, so join our charity to make sure you don't miss an update.

You can also find out more on the RESCUE website, including contact details if you'd like to reach out to the researchers and discuss how your hospital could be involved.

RESCUE website

All grant applications received by the ADSHG go through an evaluation process by a sub-committee of the board of trustees, and are marked against pre-determined eligibility criteria. For further information on eligibility for this grant or others, and for all the ways that the ADSHG can support researchers, including patient engagement and letters of support, please visit our Research page.

ADSHG supports research into adrenal insufficiency

Thank you to our members, fundraisers and donors: your support allows us to commit to awarding annual financial grants such as this one, directly impacting the future care of people with all types of adrenal insufficiency, including Addison's disease.

Our current, supported Research Projects

What is adrenal crisis?

Adrenal crisis is a life-threatening emergency for people living with adrenal insufficiency, including Addison's disease. A UK national survey of 1,789 adults with adrenal insufficiency, led by Dr Sofia Llahana at City St George’s University of London in 2024 in collaboration with the ADSHG, the Pituitary Foundation, and clinicians from 28 NHS endocrine centres across the UK, found that adrenal crisis remains common and serious.

The study showed that nearly 1 in 3 people (32%) had experienced a crisis in the past year, and over half (54%) had experienced one since diagnosis. While most people had hydrocortisone emergency kits, only 18% were able to self-inject.

Importantly, those who self-injected were 34% less likely to be admitted to hospital compared with those needing emergency care (ambulance or A&E), showing how important it is to act quickly (please see here for a summary of this research). At the ADSHG, we know too from your shared experiences that many of you find the preparation and administration of emergency hydrocortisone challenging.

Important gaps remain in the research, and we need a better understanding of how adrenal crises are managed in real-life emergency settings, as well as the full patient journey from early symptoms through to treatment and recovery. 

Building on the earlier study, the Addison’s Disease Self-Help Group (ADSHG) is leading on a UK project called The Real Story: Adrenal Crisis Management in the UK, one strand of which involves this follow-up survey and in-depth interviews to capture your experiences of preventing and managing adrenal crisis.

Together with City St George's University of London, and the Patient Support Groups working with the UK adrenal insufficiency community, we are aiming for at least 1,000 responses to the online questionnaire. The more voices we capture, the stronger the case for improving care, policy, and patient safety. Your experience matters – please take part and help make a difference!

We will continue to share findings from this project as we collect and analyse the data.

The study was approved by the Ethics Committee, City St George’s University of London [ETH2425-1801]

Please take part if you:

This study is open ONLY to people who live in and receive medical care in the United Kingdom. If you are based outside the United Kingdom, you will have the opportunity to take part in a separate international survey, which will be available in early summer. Become a member of our charity to be the first to hear.

You have the option to complete the online questionnaire (we need as many responses as possible) and/or the 1:1 interview (limited number of places available).  

Complete the online survey if you have or even if you have not had an adrenal crisis.  The more responses we get, the better. It is anonymous, so your answers can not be traced back to you. Click for further information and to read an introduction to the online survey (takes 20-25 mins). 

You must have experienced an adrenal crisis in the last 2 years to register for an interview. There are a limited number of places available. Your interview will not be linked to your online questionnaire, should you also submit that. Click for further information and read an introduction to the 1:1 interview (takes approx. 45 minutes).

Any information you provide will be handled in confidence, according to City St George's research data management policy.

We’re aiming for at least 1,000 eligible people to take part in this survey, and we can’t do it without your support. 

Every share gets us one step closer to 1,000 voices driving real change. Thank you for your help!

Download Research Study Patient Information Flyer

Thank you for supporting this significant and valuable research and helping highlight the realities of adrenal crisis management in the adrenal insufficiency community.

Associate Professor (Research) in Advanced Practice and Endocrinology, and ADSHG Clinical Advisory Panel member

adrenal.research@city.ac.uk

This year our #AddisonsDiseaseDay theme is Turn Awareness into Action, a call to move beyond knowing and into doing. Because awareness alone isn't enough. It's what we do with that awareness that saves lives, supports our community and drives meaningful change.

Through new resources, the power of personal experience and your support!

New injection video: today we launch our new injection video to support you in learning the hydrocortisone sodium succinate (powder and water) injection. Because training for these tough moments can make all the difference when every second counts. Watch, share and practise so you’re ready to inject! 

Stories of action from our community: On our blog, paramedic Lottie and content creator Emily share how they've turned their lived experience into action. Read and be inspired!

Share your experience for research: in our new study we want to hear your experiences of preventing and managing adrenal crisis. Your insights will shape how it’s understood and treated. Take action by taking part.

Have you got an Action Plan? Our latest leaflet uses a traffic light system to explain how to manage adrenal insufficiency from daily medication and Sick Day Rules to adrenal crisis. Fill one in so others can support you when action is needed. Be aware, be prepared and be understood.

Hospital awareness stands and Addison’s Afternoon Teas have taken place all around the UK today! If you’ve volunteered, thank you!

Finally, curious as to why 29 May is #AddisonsDiseaseDay? Keep reading to learn more.

Our new injection video is to support you in learning the hydrocortisone sodium succinate (powder and water) injection process. With multiple steps involved, we know from our own lived experience that this can seem overwhelming. But by practicing in a calm environment and taking it step by step, you can learn and familiarise yourself with this skill.

Training for these tough moments can make all the difference when every second counts. So gather your people and watch our new video today! You can also use one of our Injection Training Kits to practice the steps involved. We’re here to help you feel prepared.

Meet Lottie and Emily, two incredible people who have taken their lived experience and turned it into action! Head to our blog and let their stories inspire you.

As a paramedic with Addison's, Lottie has a unique insight into how to manage the condition both personally and professionally. She shares her tried-and-tested tips on how to make others aware of your steroid dependency!

Read Lottie's Top Tips

Emily is a content creator who shares her journey with Addison’s online, alongside her countryside living in the Lake District. For her advocacy is more than awareness, it’s about making our “invisible” health condition seen and understood. She shows that sharing your story, however vulnerable, can make a difference for so many others. 

Follow Emily's Journey

Adrenal crisis is life-threatening yet the real story of how people experience and manage it has been missing from research. Our newly launched research study in collaboration with City St George's University of London is looking to change that, and you can be involved.

The more voices we capture, the stronger the case for improving care, policy, and patient safety, so we are aiming for 1,000 responses. Act now: take part and share! 

Complete the anonymous online survey and/or sign up for a 1:1 interview (limited number available). Even if you’ve never experienced an adrenal crisis, you can still take part in the online survey as learning more about prevention is a vital part of this study. 

To ensure our research captures all experiences, for a 1:1 interview, we’re looking to hear from more men and people from non-white ethnic backgrounds. Your participation helps make this research truly representative. Thank you!

Find out more & take part

When you live with a rare disease like adrenal insufficiency, including Addison’s, it can feel like you're constantly explaining your condition and how it's managed, to others.

That’s where the Adrenal Insufficiency Action Plan comes in! Using a simple traffic light system, this leaflet helps you share essential information about your condition and how to manage it.

Green  - explains your daily medication and its time-critical nature.
Amber  - explains your Sick Day Rules and recommended doses.
Red  - explains the signs and symptoms of adrenal crisis, as well as emergency actions, treatment and monitoring.

This leaflet has been endorsed by the Society for Endocrinology and clinical advisors from the ADSHG and The Pituitary Foundation, as part of our Prescription Frequency Project.

Throughout May, members of our wonderful community have been coming together to host Addison’s Afternoon Tea events in support of Addison’s Disease Day - raising vital awareness and funds for the ADSHG.

From gatherings in homes and gardens to events in church halls and workplaces, it has been truly inspiring to see so many people getting involved and supporting our charity in such meaningful ways. Every cup of tea made, every conversation started and every donation given is helping us continue our work supporting people affected by adrenal insufficiency, including Addison’s disease.

One of our Afternoon Teas is taking place in Sudbury tomorrow and the invitation has kindly been extended to our community, so please join Alison’s event if you’re free! Find out more.

If you’d like to support our Addison’s Afternoon Tea campaign, please consider making a donation today.

Why 29 May? Addison’s Disease Day is held on the birthday of John F. Kennedy, the 35th US President who managed his Addison's disease and other autoimmune conditions in secret. At the age of 30, while a US Congressman, JFK was secretly diagnosed with Addison’s whilst in London, his famous suntan being a symptom of his Addison's.

It is reported that cortisone was kept in safety deposit boxes around the country, so JFK had ready access to maintenance and emergency medication wherever he travelled - his very own #ShareYourKit! His complicated medical history was only revealed to the public years after his death. JFK's younger sister, Eunice, also had Addison’s.

Explore JFK & other well known people with Addison's/adrenal insufficiency

Have you done something special to mark Addison’s Disease Day? We’d love to hear about it! Please get in touch so we can thank you and share with our community.

For Emily, advocacy is more than awareness, it’s about making our “invisible” health condition seen and understood. She shows that sharing your story, however vulnerable, can make a difference for so many others.

Looking back now, I can see the signs were there long before anyone had answers, but at the time it just felt like I was slowly losing myself without understanding why.

I was ill for around three years before I was diagnosed, with the earliest signs starting when I was about 12 years old. It began in ways that were easy to brush off. I was being sick every morning before school, over and over again, to the point where it just became part of my routine. I’d wake up already dreading how I was going to feel. I also noticed strange brown marks appearing on my skin whenever I scratched it. No one really questioned it and I didn’t know it meant anything either.

But things didn’t stay small.

As time went on, it felt like my body was slowly shutting down, bit by bit. I was constantly being sick and could barely eat anything apart from Quavers. Even the thought of most foods made me feel worse. I started craving icy water constantly, which at the time felt random, but now I understand it was my body trying to tell me something was seriously wrong.

I became so short of breath that even small things felt exhausting. My body felt weak and heavy, like I was carrying something I couldn’t put down. Right before I was admitted to hospital, everything got worse very quickly. In the space of 10 days, I unintentionally lost a stone and a half. I didn’t recognise myself anymore. I didn’t feel like myself either. It got to the point where I couldn’t even stand up for more than a minute. Imagine being 15 years old and not having the strength to stay on your feet. Everything felt like too much.

December 2017 is when everything finally came to a head. I went into hospital on the 18th, right in the middle of my mock exams. At that point, I think part of me knew something wasn’t right, but I didn’t realise just how serious it was. Over the next few days, I stayed in hospital while they ran what felt like endless tests. Blood tests, monitoring, questions, trying to figure out what was going on. I was there for four days in total, waiting for answers without really knowing what they were looking for. I was diagnosed on the 20th with Addison’s disease.

In a strange way, there was relief in finally having an answer. After years of feeling unwell and not knowing why, it gave everything a name. But at the same time, everything changed. I went from not knowing what was wrong, to being told I had a lifelong condition that I would have to manage every single day.

On the 22nd, I travelled to Newcastle to see specialist endocrinologist Dr Tim Cheetham. That appointment was overwhelming but also grounding. It was the first time I felt like I had some sort of control again. I was shown how to manage my condition, what I needed to do to stay safe and how to start rebuilding.

And somehow, just a few days later, I was back home for Christmas. It felt surreal, like everything had happened so quickly but also like it had been building for years.

Even after being diagnosed, it didn’t suddenly get easier. If anything, it was the beginning of a completely new way of living. It took me years to really understand my body again, to trust it and to learn how to listen to what it was trying to tell me.

Life after being diagnosed with Addison’s isn’t something you just adjust to overnight. It’s something you learn slowly, sometimes through trial and error and sometimes the hard way. For me, it became about learning how to live with my body instead of feeling like I was constantly fighting against it.

The basics matter more than anything. Taking my medication on time isn’t optional, it’s essential. Even being a few hours late can completely change how I feel. It’s always there in the background, something I have to be aware of no matter what I’m doing.

Diet has also played a huge role in how I feel day to day. Around a year after being diagnosed, I really started focusing on what I was eating and it made such a difference. It helped with pain, energy levels and just feeling more like myself again.

Movement is something I’ve grown to really value too. I go to the gym, I love hiking and even just getting outside for a walk can completely shift how I feel. It’s not about pushing myself too far, it’s about supporting my body in the right way and learning what works for me.

But more than anything, it’s the mental side that changes you. You learn to check in with yourself constantly. You learn that you cannot always push through things the way you may have before, and that’s not weakness, it’s awareness. It’s understanding your limits and respecting them.

One of the biggest misconceptions I come across is people thinking Addison’s is, “just being tired.” Fatigue is definitely part of it, but Addison’s affects your entire body and can become life-threatening. Because it’s an 'invisible illness', people often assume you’re completely fine because you “look healthy,” but there’s so much happening behind the scenes that people don’t see. Some days are easier than others.

Some days your body reminds you very clearly that Addison’s is still there. But over time, you learn how to respond to that instead of ignoring it. It becomes a balance. One that takes time, patience and a lot of self-understanding.

When I was first diagnosed, I felt really lost. There wasn’t much out there and a lot of what I know now I had to figure out myself over time. It can feel incredibly isolating when you don’t fully understand what’s happening to your own body.

As time went on, I realised how much I’d grown from the experience, not just physically but mentally as well. That’s what made me want to start sharing my experience online.

I’ve always loved creating content around fashion, the outdoors, hiking, lifestyle and everyday moments, but over time I realised my health was a huge part of my life too. I didn’t want Addison’s to be something hidden away, because it impacts so much behind the scenes.

One of the biggest things I’ve learned from sharing my experiences online is how many people are silently struggling. Some of the messages I receive are from people living with Addison’s or other chronic illnesses, while others are still searching for answers themselves. A lot of people say they feel understood or less alone after seeing someone speak openly about it, and that’s probably the most meaningful part of all of this for me.

I’m also quite intentional with what I choose to share online. I never want my content to feel completely centred around illness because Addison’s is only one part of who I am. I still love creating content around fashion, hiking, farm life, travelling and everyday routines but I also think it’s important to show the reality behind the highlights sometimes too.

Content creation has become such a creative outlet for me. An average day can involve filming videos outdoors, editing content, going on hikes in the Lake District, creating fashion and lifestyle posts or simply documenting slower everyday moments. No two days really look the same, which is something I love.

Living with Addison’s has definitely changed the way I approach all of it though. I’ve had to become much more aware of my energy levels, stress, sleep and routine. Planning ahead is really important, especially for long filming days, travelling or spending long periods outdoors. Some days I can do a lot and other days my body reminds me to slow down. 

One thing Addison’s has taught me is that rest is productive too. I used to feel guilty slowing down, but now I understand that looking after myself is part of being able to continue doing the things I love.

To anyone wanting to share their experiences online, I’d say do it in a way that feels comfortable and authentic to you. You don’t have to share everything to make an impact. Even speaking honestly about small parts of your experience can help someone else feel seen, understood or less alone.

Living with Addison’s has taught me a lot, especially about myself. Not everyone is going to understand what you’re going through and that’s okay. In a way, you wouldn’t want them to, because it means they haven’t had to experience it themselves.

I’ve learned how important it is to listen to my body, to actually pay attention to what it’s telling me instead of constantly pushing past it. Your mind and body aren’t separate - they work together and when one is struggling, the other feels it too.

Rest is something I’ve had to learn, not just physically but mentally as well. Learning to rest without guilt is still something I’m working on, because it doesn’t come naturally, but it’s so important. Living with Addison’s isn’t always 'visible', but it is always there. It’s something I carry with me every day in how I think, how I plan and how I look after myself.

Sharing my story is my way of turning awareness into action. Because the more we talk about Addison’s, the more people understand it and the more supported those living with it will feel. If this helps even one person feel less alone or encourages someone to listen to their body and push for answers, then that’s exactly why I wanted to share my story.

Managing Addison’s has become part of my everyday routine now. I use alarms on my phone to remember my medication and always make sure I carry spare tablets with me wherever I go, because consistency is so important when managing Addison’s disease.

I carry my emergency injection kit with me, especially when travelling, hiking or spending long days away from home. Having it with me brings reassurance and allows me to feel more confident doing the things I enjoy.

I use medical identification and keep emergency medical information on my phone as well. I think medical ID is incredibly important because it can speak for you in situations where you may not be able to explain your condition yourself.

Exercise

Reducing the stress of a long-term condition

Newly diagnosed or want to learn more?

My name is Lottie, and I am a paramedic living with Addison's disease. I was a paramedic long before Addison's came into my life, and as I am sure you can all understand, the diagnosis has come with lots of adjustments. A big one is making sure I have everything in place in case I have an adrenal crisis, and that no matter what happens, the clinicians facilitating my care are fully informed on my medical history and what that means for my treatment.

In my work, I have seen every type of medical alert jewellery you can imagine, as well as numerous other methods of making a diagnosis known, such as alert cards, tattoos, clothing, lanyards, seat belt covers, bags, address tags, the list goes on! So, what actually works, which should you avoid, and which are the gold standard? This article aims to answer exactly those questions, and more, so you can make informed decisions on what would work best for you and your needs.

Where else to start but with the one thing most of you probably already have, or have at least heard about: medical alert jewellery. As clinicians, we are trained to check unresponsive patients for clues which can lead us to a reason for their collapse, and one of the big things we are checking for is any wearable medical alerts.

What we aren't doing though, because we simply don't have time if you're severely unwell, is checking little charm bracelets and trying to decipher calligraphy. Medical alert jewellery needs to be clear and stand out. I see so many advertised as “discreet”, which is the complete opposite of what you want in an emergency! So, what types of medical alert jewellery are considered to be ‘good' and what is ‘bad’?

I personally wear two medical alerts - a plain silicone wristband with “steroid dependent” on it, which I wear 24/7, and then a more detailed magnetic wristband with more details, including my emergency contact.

The ADSHG recommends that for engraved identification, without other medical conditions requiring priority attention in an emergency, the suggested wording should be as below (edited to the type of adrenal insufficiency you have):

“Primary/ Secondary/ Tertiary Adrenal insufficiency. Steroid-dependent.” 
If space, you may choose to add: "at risk of adrenal crisis."

If you have Addison's disease, for example, the suggested wording is: "Primary Adrenal insufficiency (Addison's disease). Steroid-dependent".  

For more details visit the medical jewellery section on the ADSHG website. Silicon band options are available from the ADSHG shop.

Steroid cards are invaluable tools for clinicians. They are direct and to the point, providing exact guidance on what care to provide in an emergency in the language we speak. These are little cardboard cards you can get from your healthcare team and you complete it with your information on the one side and the reverse has a step-by-step treatment guide. I recommend you buy a card sleeve (a clear sleeve you can get online) to place the card in to protect it.

Then, keep your steroid card wherever suits you best - be that your wallet, with your daily medications, in your phone case, in your injection kit, etc. In fact, I have three! One I keep in my injection kit, one I keep in my purse, and the final one I keep in with my daily medications.

I have heard so many myths about paramedics/clinicians of all types not being allowed to check medical alerts, and In Case of Emergency (ICE) information on patients’ phones, and I want to be clear: this is in no way true. If I, as a paramedic, arrive at an unresponsive patient where I have no idea who they are/what their medical history is, I enter detective mode, and that includes checking their phone for medical information. Not only is this completely allowed, it is encouraged.

This does not mean I use the patient’s fingerprint or face ID to unlock their phone and go scrolling through their camera roll. Frankly, even if that wasn’t beyond creepy, I have bigger fish to fry at that moment! Medical alerts, when granted permission to do so by the user, are accessible through the phone lock screen and do not allow us to access anything on the patient’s phone outside of whatever has been documented within it.

I recommend you complete this and include your full name, date of birth, home address, NHS number (if known), allergies, medical history, medications, any other pertinent information, AND the date when you last updated it (this is important so the paramedics can gauge the accuracy - I check and update mine at the beginning of each month, and if nothing has changed, I simply change the date).

This can look different for everyone, as it depends on the medical conditions you have. But the principle remains the same: have a piece of paper which includes everything someone needs to know about you in an emergency. The ADSHG have a Medical Summary document you can complete, as well as their Adrenal Crisis Guidelines document.

For myself, due to my different health conditions, I’ve created my own and call it a Hospital Passport! It is similar to the medical alert information on my phone, with added information as needed for scenarios where people may be caring for me over a longer period.

Whether you call it a Medical Summary or Hospital Passport, these are not only amazing for emergency care, but also in appointments when asked about medications etc., as you can simply hand this over to the clinician to read!

On the back of the Medical Summary, there is a section where you can write other information that may be useful for someone caring for me to be aware of. Whether you do this or not, and what you include, is completely up to you! For me, this includes things like the best places to get blood and cannula access, which anti-sickness and pain medications work best for me, which adhesives I do and don’t react to, etc.

Should I end up in hospital, my partner knows to grab three things: my medications, my hospital bag, and my hospital folder. What is a hospital folder? It is whatever you want it to be!

Mine contains:

On the front, I have the ADSHG ‘steroid-dependent’ sticker, which outlines how to treat me in an emergency - you can buy these as ready-made stickers or, as I did, print one and tape it on!

I’ve recently added the new ADSHG Adrenal Insufficiency Action Plan to my folder, which uses a traffic light system to explain to others how to manage adrenal insufficiency through daily medication (green), Sick Day Rules (amber) to adrenal crisis (red).

If you haven’t already, be sure to download the NHS App and check that the information on your GP records is both up-to-date and, also that ‘Addison’s disease’ or ‘adrenal insufficiency’ is clearly displayed in your list of ‘health conditions’ alongside any other pertinent diagnosed conditions you have. If anything is missing, contact your GP surgery and request the duty doctor update your Summary Care Record (SCR) appropriately. This can be a pain if your GP isn't sure what you're asking for, so the ADSHG have a template letter you can complete which explains clearly to your GP how they update your Summary Care Record. 

When paramedics access your medical records (with your consent or with assumed consent if you’re unresponsive), what you see in your GP Health Record is what we can see. If we cannot see that you have adrenal insufficiency, we don’t know to treat you for it. In the past, ambulance services would place flags on addresses, which would alert the crew to a diagnosis of Addison’s or adrenal insufficiency, however, these are now being phased out, with many ambulance services already having stopped utilising them.

The only way to get that information to the crew now, in the absence of any of my previously suggested methods, is by having it on your Summary Care Record via your GP.

So take action, complete the SCR letter and give to your GP!

Some quick-fire good, bad, and okay-ish methods of alerting professionals to your diagnosis:

Tattoos: Legally, these are not admissible as a medical alert. There is no way of knowing whether that tattoo is for yourself or someone you know with the condition, and also tattoos are not something medical professionals will be checking for medical alert information.

Seatbelt covers: These are a brilliant way of making your condition known in an emergency! I recommend having your name and date of birth on it somewhere also, so first responders can quickly verify that it belongs to you.

Patches: - I have seen some people have sew-on patches on their bags which alert people to your medical needs. If used in conjunction with other methods, these can be helpful, especially if they indicate that you are carrying an emergency injection kit in the bag they are attached to! I wouldn’t recommend them as the only form of alert, though, as they could be easily missed.

Keyrings: Again, these are great additions, but I wouldn’t recommend they be used on their own, especially if it is amongst other keyrings - clinicians won’t have the time to sit there checking every keyring to see if they hold any information, nor will they think to in an emergency. I have the ADSHG keyring as an 'extra' on my keys!

Magnets: These depend heavily on where you are putting said magnet. If it is next to/near where you keep your medications, then this may be helpful, but otherwise we are unlikely to notice it unless it is large and clearly labelled itself, such as the “Risk of Adrenal Crisis” magnet from the ADSHG website. Using this to hold your Medical Summary or Adrenal Insufficiency Action Plan on your fridge will make both more likely to be noticed, as letters/papers are something we go looking for to find information, and the kitchen is one of the first places we will be checking!

Lanyards and ‘Dog Tags’: Same as jewellery, these are a brilliant way to alert people to your needs!

So there you have it! Hopefully, this helps alleviate some confusion around medical alerts and medical care, from a paramedic who lives it, personally and professionally!

Making others aware of your condition

Resources hub (leaflets, letter templates)

ADSHG online shop

Adrenal crisis emergency

Efmody® is a 'modified release' form of hydrocortisone, which can be used to treat all types of adrenal insufficiency, including Addison's disease.

Modified release means that it is not immediately released into the bloodstream when it is swallowed, allowing for its effects to happen at a point some time after taking the medication.

Efmody® comes in a hard capsule, where the coating is pH-resistant so that it does not break down and release the hydrocortisone in the stomach.  Instead, it is released in the small intestine, peaking approximately 4.5hours post-dose.

Efmody® is available in 5mg and 10mg capsules. An 'average' daily dose is 25mg, taken following a 'toothbrush regimen': a larger dose at night and a smaller dose in the morning. 

Fig 1. (left) shows a  'normal' cortisol curve (red line) alongside the cortisol curve for immediate-release hydrocortisone (green dotted line).

The blue shaded area is the pre-dawn 'natural' cortisol rise that is not addressed by immediate-release hydrocortisone.

Fig 2. (right) shows the 'normal' cortisol curve (red line) alongside the cortisol curve for patients taking Efmody® (dotted green line). You can see that patients on Efmody® experience a pre-dawn rise of cortisol that more closely matches the 'natural' cortisol curve.

In a 'normal' cortisol curve in someone with fully functioning adrenal glands (the red line on the two graphs above), cortisol levels rise gradually during the early hours of the morning when you are sleeping and give a 'pre-dawn rise'.

When someone with adrenal insufficiency wakes up, they have almost no cortisol in the body at a time when it’s designed to be at its peak. Clinicians think that this is the reason why many people struggle with quality-of-life issues in the early morning, and struggle to get out of bed or feel nauseous until their morning dose has kicked in. Following a dose of standard 'immediate release' hydrocortisone, prescribed for many people with adrenal insufficiency, cortisol levels in the body start to rise after 20-30 minutes, peaking around an hour after taking the medication (Fig 1.).  

Following taking a bedtime dose of Efmody®, the modified release structure means it will be released at a time to more closely match the 'normal' cortisol curve (Fig 2.), addressing the pre-dawn rise of cortisol (shaded blue in Fig 1.), which people with Addison’s and adrenal insufficiency miss out on as they're still sleeping! 

In our Winter 2024/5 magazine, we shared an article where Dr Alessandro Prete, one of the clinical advisors to the ADSHG, updated us on the research he led on Efmody. This study, involving 58 UK patients with Addison's disease (primary adrenal insufficiency) has now been published in the Lancet (Jan 2026): Effects of modified release hydrocortisone on restoration of early morning cortisol, quality of life, and fatigue in adrenal insufficiency (The CHAMPAIN study): a randomised, double-blind, double-dummy, cross-over study comparing Chronocort and Plenadren - eClinicalMedicine 

We summarise the study here, starting with its hypothesis, that is, what it was setting out to prove or disprove; 

Restoration of the physiological overnight rise in cortisol has more beneficial effects than daytime cortisol replacement alone in patients with adrenal insufficiency.

The study compared the efficacy, safety, and tolerability of Efmody® with Plenadren®, another modified-release hydrocortisone formulation.

Included patients were:

Following screening, patients were randomly given either Efmody® or Plenadren® for 4 weeks - Treatment Period 1 and then switched and given the other medication for 4 weeks during Treatment Period 2. It was a 'double-blind study', which is to say that they did not know which medication they were taking in either of the treatment periods.

The main 'test' of they hypothesis (known as the 'primary endpoint') was to look at 7am cortisol levels in the participants after 4 weeks of treatment, and to compare them for the 2 patient groups taking either Efmody® or Plenadren®.

The primary endpoint results were statistically significant and showed that 7 am cortisol levels in the patients taking Efmody® were higher than those taking Plenadren®.

'Secondary Endpoints' were other ways they measured how the medications were affecting the participants. For this, they asked participants to complete a variety of standardised questionnaires to measure fatigue, overall health and quality of life.

Expanding on the existing license for patients with CAH (since Oct 2021), Efmody® was granted MHRA approval for adrenal insufficiency patients in the UK on 6th May. This includes England and the devolved nations. It is licensed only for patients aged 12 years or more in both the UK and the EU. Please click on the link below for the news release from Immedica Pharma AB, who manufacture Efmody®.
 
Immedica Pharma AB news release

It has also been given EMA approval for use with adrenal insufficiency patients in the EU (on 27th March). There is no license for it in the USA. 
 
Efmody® has not been developed as a 'first-line medication', i.e. it would not be prescribed on diagnosis; the primary glucocorticoid treatment for adrenal insufficiency is immediate-release hydrocortisone, as noted in the NICE Guidelines for the Identification and Management of Adrenal Insufficiency (2024).
 
Clinicians are yet to develop the guidance around when to prescribe it, but it is likely to be for patients with complex health needs for whom other steroid replacements, such as immediate-release hydrocortisone or prednisolone, have not been successful and who have enduring symptoms that affect quality of life.

Efmody® costs around £4000/year per patient, for an average dose of 25mg/day. The cost is the same whether it is a private prescription (where the patient pays) or an NHS prescription. In comparison, 25mg of immediate-release hydrocortisone costs (very approximately, as prices vary from brand to brand, month to month and depend on tablet size) £320 a year/patient.

Currently, there are 3 ways of getting it prescribed, and it will depend on your area (unfortunately and frustratingly, this does mean a postcode lottery!), as it depends on individual Integrated Care Boards (ICBs) and which medications they have on their approved lists.

Private Prescription
Efmody® is available with a private prescription (from a private prescribing clinician) across all areas of the UK now that it is licensed for patients aged 12 years old+, who have any type of adrenal insufficiency.

The cost for this would be around £4000/year, plus the cost of an appointment with a private prescribing clinician.

Efmody being added to the ICB-approved medications list: a formulary application on behalf of a patient
This route is applicable only for England and Wales (where Efmody has been approved for use with CAH patients). In Scotland and Northern Ireland, only the previous two options are available to you (private prescription or individual funding requests).

There are 40 Integrated Care Boards (ICBs) in England, and each have their own individual approved medication lists. These list medications using a traffic light system of green/amber/red, which indicates a number of factors, including how frequently they might be prescribed by hospital clinicians, and in what clinical circumstances. Currently, out of these 40, 23 have approved Efmody® as either an amber or red medication for use with CAH patients. As the license for adrenal insufficiency patients has only just been approved, none of the 40 ICBs yet have Efmody® as an approved medication on their list.

It is not clear whether the 23 that already have it on their approved lists already, will automatically approve it for adrenal insufficiency patients, or whether a forumlary application will need to be submitted as if it were a new medication.    

Applications for new medications to be added to an ICB-approved list involve a clinician submitting an application on behalf of their patient. Similar to the Independent Funding Referral, it requires clinical justification of the need for the more expensive drug.  

This is all happening against the backdrop of the UK Rare Disease Framework.  This is a policy supported by England and the devolved nations, which aims to improve access to medications for rare diseases by addressing the unique challenges faced by these conditions.

Key points that are included in this framework are:

Whilst further studies in the future will likely bring more understanding of the benefits of Efmody®, for patients in the CHAMPIAN study that we shared above, it had statistically significant benefits in terms of health and quality of life.

Clinical guidelines need to be drawn up still around who is most likely to benefit from Efmody®, but in the meantime, it is important that prescribing hospital clinicians take the step of applying for Efmody® to be added to their ICB-approved medicines lists. 

The trigger for this to happen is for you to talk to your endocrinologist if your low cortisol symptoms are seriously impacting your health and quality of life on your current replacement steroid medication regimen. So, if this describes you, ask your endocrinologist if you can trial Efmody®. Be prepared to tell them about your symptoms, e.g. fatigue, nausea or brain fog, and how it impacts your life, as they will need this information to justify their application.

Thank you to Professor Aled Rees, School of Medicine, Cardiff University, for his comment;

We were really pleased to be involved in the CHAMPAIN clinical trial of Efmody in adrenal insufficiency. The study showed improvements in quality of life, particularly with issues like morning fatigue, compared with Plenadren. It’s great to see Efmody now approved for use in the UK following this important work. Looking ahead, the key question will be understanding which patients are most likely to benefit, and working with regulators to help shape clear guidance on how best to use it in practice.

At the ADSHG, we are working hard behind the scenes, both independently and with other Patient Support Groups, to share the impact of this decision with people and organisations of influence, in an effort to drive change and improvement.   

Use our letter templates below to write to or email your Member of Parliament (England), Member of Senedd (Wales), Member of Scottish Parliament (Scotland), or Member of Legislative Assembly (Northern Ireland).

Let them know how the discontinuation of the manufacture of hydrocortisone sodium phosphate (liquid hydrocortisone - known as "pre-mixed" injection to many) has impacted you!

Letting your local MP know how you personally are affected by this decision allows them to see the true impact of the discontinuation. The more people who contact their MP, the greater the chance it will be acted upon. 

Being part of a rare community, we need to SHOUT LOUDER to be heard.

We have put together a template (one each for England, Wales, Scotland and Northern Ireland), asking your MP to raise awareness of this issue in Parliament.   

In the letter we:

Urge the Department of Health & Social Care to work to find an alternative source of hydrocortisone sodium phosphate for UK distribution.

Urge the Department of Health & Social Care to work with Pfizer to bring ACT-O-VIAL (dual compartment vial hydrocortisone product) to the UK.

Urge the DHSC, OLS and MHRA to explore how best to support bringing a pre-filled syringe or auto-injector to the UK market for adrenal crisis prevention & treatment.

We recommend downloading the letter template on a laptop or computer, where the file is easier to locate. When downloading on a mobile phone, downloads go into a separate folder (this can vary between Android and iPhone), which can make it appear like the link is broken. Please check the downloads on your mobile phone or for ease access using a computer.

To send a letter in the post: download the Word document and update the areas in purple text. Print it, sign it and pop it in the post to your MP

To send an email: download the Word document and copy and paste the main section of the letter into your email. Update the areas in purple text.

]]> Cathy Thompson Wed, 20 May 2026 14:28:56 +0000 https://www.addisonsdisease.org.uk/news/archive/post/23-running-in-memory-of-maggie-llhm-2026 Each year, supporters of the Addison’s Disease Self-Help Group proudly take part in the London Landmarks Half Marathon (LLHM) to raise funds and awareness of our rare condition. We are incredibly grateful to everyone who chooses to run for our charity and share their personal stories along the way.

This year, Ciara and Margaret took on the challenge in memory of Margaret’s niece, Maggie. Their inspiring experience is shared below in Margaret’s own words.

Ciara and I were absolutely delighted to be successful in securing a place in the LLHM. For us, this run meant so much more than crossing a finish line. We were running in memory of my little niece, Maggie, who tragically passed away due to undiagnosed Addison’s disease.

We took part to raise vital funds for the Addison’s Disease Self-Help Group, while also helping to raise awareness of this rare and often misunderstood condition.

To make the date even more poignant, the LLHM weekend coincided with what would have been Maggie’s 10th birthday weekend, making the experience deeply emotional and incredibly meaningful.

The fundraising support we received was nothing short of overwhelming. Our local community, friends, and family truly outdid themselves, helping us raise an incredible £4,550. Alongside the donations came countless words of encouragement, kindness and support, all of which carried us through the tougher moments of training and race day itself. We are so grateful to everyone who contributed in any way.

Training went really well in the lead-up to the event. We attended our regular GRC (Glenlough Running Club) training sessions, with the addition of longer weekend runs alongside our brilliant Saturday morning crew. The camaraderie and shared commitment made the training not only manageable but genuinely enjoyable.

When race weekend finally arrived, excitement and nerves went hand in hand. There was the challenge of travelling, preparing and making it to the start line - alongside the added excitement of spending the weekend in London. What followed was an unforgettable experience.

The support around the course, combined with the breathtaking views of London’s iconic landmarks, created an atmosphere that was truly special. Every cheer, every sign and every smiling face along the route pushed us forward.

We would like to sincerely thank Chloe from the ADSHG team for giving us this opportunity to remember Maggie in such a meaningful way, while helping to raise awareness.

It was an honour to run for her.

Thank you to Margaret, Ciara and all those who supported them throughout their LLHM journey. Raising awareness and supporting people affected by adrenal insufficiency, including Addison's disease, is only possible because of incredible supporters like you. We are deeply grateful for your dedication and generosity in Maggie’s memory.

Donation Page

A special thank you also goes to all of Maggie’s family and everyone supporting and fundraising in Maggie's memory as part of “Maggie’s Magpies”. We are so grateful for your ongoing support, your commitment to raising awareness and for continuing to honour Maggie in such a meaningful and inspiring way.