Newly Diagnosed? Get Ready!

Addison's Disease and adrenal insufficiency are lifelong conditions that require daily medication. This means that you will need to learn how to manage Addison’s day-to-day, yourself. Being well-informed will not only help you to look after your health but will also make you feel more confident and in control.

Get educated

We provide a wide range of publications and information to members. View all our free downloadable publications.

A good place to start is to read our leaflets which contain the key points that everyone with Addison's needs to know to manage their health. Start with these as applicable:

Watch: The ADSHG have a YouTube channel which includes 'how to' hydrocortisone injection videos, personal stories from the Addison's community and an educational video on adrenal crisis narrated by Professor John Wass.

Read: In 2019, in response to members feedback the ADSHG released our first book - "Living with Addison's Disease – A Guide For People With Addison's, Supporters and Professionals" which is available to buy worldwide on Amazon. This book brings together practical day-to-day hints and tips about Addison's, as well as explaining more about medication, your endocrinology team and quality of life.

Get medical alert jewellery or ID & carry a steroid card

Steroid Card: Because you have to take steroid medications every day of your life, you will need to carry a steroid card, which identifies to healthcare providers that your medication cannot be stopped.

NHS Steroid Emergency Card: if you have not already been provided with the card, view our NHS Steroid Emergency Card guide to find out more about ordering and how to keep a digital copy on your phone.
ADSHG Adrenal Crisis Emergency Wallet Card: you can also purchase the charity emergency wallet card from our online shop. This contains advice authored by the ADSHG clinical advisory panel on the treatment required to prevent an adrenal crisis in the event of serious injury or illness.

Medical Jewellery: There are a number of companies that offer different forms of medical ID or jewellery designed to alert medics to your medical condition in case of emergency. They should contain information about your diagnosis and medication needs. These come in lots of different designs so there is something to suit everyone. It’s advisable to choose a design that is easily identifiable as being a medical alert item. Our online shop also sells steroid alert wristbands.

Carrying a steroid card and wearing medical jewellery are vital steps to keep you safe. They provide life-saving information should you become seriously ill or unconscious and are unable to communicate your health problems effectively. So make sure to pop your steroid card in your wallet or purse and wear your jewellery daily! These simple but important steps can help give you peace of mind should you become unwell and support your independence.

Be kind to yourself

Each person’s experience of being diagnosed with Addison’s is different; it can be a stressful and confusing time both for the person diagnosed and those close to them. Try to look after yourself and give yourself time to digest the information about your diagnosis.

The ADSHG online forum can be a reassuring place to share your concerns and questions with others. Addison’s is a life-long condition, but with the right balance of daily medication, people with Addison’s can expect to have a normal life span and to lead full and productive lives.

Latest

New UK Rare Diseases Framework launched

On 9 January 2021, the Department of Health and Social Care published the UK Rare Diseases Framework. But what does this policy mean for those with Addison’s disease, adrenal insufficiency and the rare disease community as a whole?
Research Application

The ADSHG receives regular approaches from researchers who are seeking our assistance with recruiting participants for their scientific projects, from online questionnaires to to requests to assist with long-term clinical trials. Find out more.
Vaccines and Adrenal Insufficiency

Vaccines and Adrenal Insufficiency - if you have Addison's Disease or another form of adrenal insufficiency, which vaccines should you have? Is it safe to be vaccinated? What do you need to know before you go for a jab?
Novel Coronavirus (COVID-19) - 19/01/2021

Our medics have been keeping an eye on the emerging situation. This page is up to date but we will continue updating it regularly as we find out more information from the government.

Updated NHS Steroid Card Released

Following the early release of the new NHS Steroid Emergency Card back in March to keep patients with Addison's or adrenal insufficiency safe during the COVID-19 crisis, the NHS steroid card has been updated and physical copies will be available to order from Tuesday 18th August 2020 for hospital teams!
New Video: Managing medication and COVID-19 - 29/03/2020

In our latest video, ADSHG Trustee and Professor of Endocrinology explains how to manage your medication should you get ill in the coming weeks.
Behind the News: Hydrocortisone as a Covid-19 Treatment - 09/12/2020

In recent days, UK news networks have been sharing a story about new studies hailing Hydrocortisone as a Covid-19 treatment. We asked our medics to review the research and the emerging stories so that we can give you a balanced perspective while also updating you on any impacts to the drug supplies we depend on.
New UK Rare Diseases Framework launched

On 9 January 2021, the Department of Health and Social Care published the UK Rare Diseases Framework. But what does this policy mean for those with Addison’s disease, adrenal insufficiency and the rare disease community as a whole?
Research Update - Professor Arlt's Perspective - 17/03/2020

In 2017, Weibke Arlt, a member of our Clinical Advisory Panel, published research about Addison's and natural killer cells. In recent weeks, it's gone viral in light of the COVID-19 outbreak. We asked her to give her perspectives on what that means for us. She kindly tweeted her responses yesterday.
Easing lockdown: How are you feeling? - 10/5/2020

It's important to remember you're not alone in experiencing a range of emotions after adapting to lockdown life.
[Superceded} EJE Guidance: Managing Adrenal Insufficiency in the time of COVID-19 - 21/04/2020

the European Journal of Endocrinology (EJE) editoral board has commissioned a new guidance series for the management of endocrine conditions during COVID-19. Included within this is clinical guidance for the management of Addison's disease and adrenal insufficiency. Here we take a look at this vital new guidance, so you can get a clearer view of what this means for you or your loved ones.
ADSHG Socials: Hosts share personal stories and injection practise in weekend watch party

ADSHG Socials: Hosts share personal stories and injection practise in weekend watch party
Getting a flu vaccination this winter

Getting flu is a thoroughly miserable experience. However, if you are steroid-dependent, the consequences can be very serious, with around a quarter of adrenal crises requiring hospital admission resulting from flu-like illnesses (ADSHG member survey 2013). Fortunately, flu can be prevented – and surely, prevention is better than cure?
COVID-19: Clinical Management guidance: Adrenal Insufficiency

For Healthcare Professionals: Suggested management and hydrocortisone stress dose cover in patients with Adrenal insufficiency and suspected or confirmed COVID-19 infection.

Research Grants

Our charity is at the forefront of medical research into Addison's Disease. Help us fund medical researchers working in this important field of endocrine research. Read more