Happy Addison's Disease Day 2023!

Happy Addison's Disease Day! A day for everyone who is affected by Addison's disease and adrenal insufficiency, to come together to raise awareness and celebrate this incredible community.

This year we're focusing on the #RareReality of living with a rare health condition, shining a light on being an 'expert patient', whilst also celebrating our incredible community. Read on to find out more!

Join our Twitter chat today at 10.30am on this year's topic "The #RareReality of an expert patient." Our Twitter chats are a great opportunity to swap tips and knowledge with others, as well as asking our expert panel your questions.

So please join the conversation from 10.30am on @AddisonsUK, using the hashtag #AddisonsQA. If you can't make it, no worries! A summary of the key pieces of advice will be in our members' magazine and on our blog.

Join us on Twitter

We learn so much from each other's stories, experiences and can take comfort that we're not alone. To raise awareness around the need to be prepared as an expert patient, Dan bravely shares his emergency experience with us.

"Know what you’re going to do in case of an adrenal crisis. Know where things are. Know what you need to tell medical professionals... Be firm but polite. You know your body. You will know when things don’t feel right. Take an extra dose and make sure you know where your kit is."

Read Dan's blog: my adrenal crisis & hospital admission

As expert patients, we also have to educate those around us. To help lighten this burden on you and your loved ones, we've created resources to support you.

New Clinical Guidance for your appointments

A Consultation Reference Guide endorsed by the Society for Endocrinology is now available. Preparing for appointments helps you get the most out of those vital minutes, as well as easing any worries you may have. This reference guide helps prompt you and your endocrine specialist on important issues. Read more on our website.

Educating GPs - free RCGP adrenal insufficiency course

To tackle the lack of knowledge and education for GPs, we've launched with the Royal College of General Practitioners (RCGP), a free GP education module: “Adrenal insufficiency with a focus on Addison's disease”. The module provides your GP with information on your regular care, such as the need for three monthly prescriptions for essential steroid medication. This Addison's Disease Day we're asking you to download and share our RCGP poster with your GP, so they can complete this free CPD, improving your care.

Exclusive access to 'Advanced Practice in Endocrinology Nursing' textbook

Publishers Springer are generously giving free access to the 'Advanced Practice in Endocrinology Nursing' and their two chapters on adrenal insufficiency, until 12 June 2023. This textbook is a multidisciplinary collaboration from 118 authors across the globe and includes 69 chapters. It is the first ever endocrine nursing book providing a comprehensive resource for paediatric and adult nurses. Thank you to Springer and Dr. Sofia Llahana for organising this exclusive contribution to Addison's Disease Day.

Enjoy these fascinating chapters:

Take part in research - share your expert voice

Finally, please use your expert patient voice to contribute to research. Two projects we're currently supporting need your input through online surveys. Click here to contribute to adrenal crisis research. And here for research development into a cortisol sensor. Thank you!

Did you catch Giulia Bould speaking about Addison's on BBC Radio Merseyside? Giulia, who is a sports presenter for BBC Radio Merseyside, spoke about her diagnosis, how she paces her energies to balance her busy job, what being an expert patient means to her and how she will be taking part in our Twitter Chat today!

You can listen to the interview on BBC Sounds (interview starts at 1:30) and hear more from Giulia in her blog 'Broadcasting far and wide'. Thank you so much Giulia for raising awareness and sharing your story!

Listen to Giulia's interview on BBC Sounds

Philippa from the ADSHG spoke to National Voices about the ADSHG and the awareness needed for those living with a life-threatening rare condition and the role of the expert patient.

Read Addison's Disease Day: support for a rare condition

Keep joining us in our #ShareYourKit campaign! It's important to talk about injection kits and educate those close to us. We're asking you to share pictures of your hydrocortisone emergency injection kit to educate, remind and encourage people to kit their kits with them at all times.

So snap a photo and post on your social media using the hashtag #ShareYourKit (making sure to tag the ADSHG charity social media accounts too!) If you would like to feature on our website like Sue, Shona, Fiona, Bexi, Beth, Hannah and Stuart - send us your #ShareYourKit!

From all of us at the ADSHG, thank you for your support. Our work simply wouldn't be possible without you, our volunteers and our fantastic fundraisers. We're incredibly proud of our amazing community and how we continue to work our way forward together. Thank you for being part of the ADSHG.

Happy Addison's Disease Day everybody and have a lovely bank holiday!

Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today!

Join the ADSHG

Connect on social media! Follow us on X / Twitter, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube.

Latest

40th Anniversary Addison's Roadshow

Please join our Addison's Roadshow to celebrate 40 years of the ADSHG! Anyone affected by Addison's disease or adrenal insufficiency, and those that support them, can come along.
Ingrid's Story: Exercising with Addison's

Meet Ingrid who has recently taken up a new hobby, going to the gym. Here Ingrid hopes to inspire others to get exercising this New Year while also reminding us of the importance of managing your Addison’s too.
Shona’s Addison's Afternoon Tea Fundraiser

I'm raising money for the Addison's Disease Self-Help Group so that they can continue to support people with Addison's and adrenal insufficiency. Addison’s is a rare endocrine condition where the adrenal glands do not produce enough steroid hormones and can be life threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 - 350 new cases are diagnosed each year across the UK, this makes it roughly 300 times rarer than diabetes.
Behind the Research: Implementation of perioperative guidelines & steroid emergency card

Congratulations Louise Breen on receiving the Annette Louise Seal Memorial Award! Louise shares more about her work as an Advanced Endocrine Nurse Practitioner & first Chair Elect of the Society for Endocrinology Nurse Committee

Sick Day Rules

Minor ailments can affect anyone with a steroid-dependent adrenal condition very differently. Things like vomiting, diarrhoea, colds and flu could cause an adrenal crisis. It’s important that you spot the early symptoms of a bug or cold and adjust your steroid replacement medication.
Adrenal Crisis - Emergency Help

Adrenal crisis is a time-critical, life-threatening emergency and must be treated immediately. Read the guidance on treating a steroid-dependent patient in adrenal crisis.
What is Addison's Disease?

Find out more about Addison's disease and adrenal insufficiency and and how they are treated.
The Emergency Injection for the treatment of Adrenal Crisis

Understanding what an Emergency Injection kit is, how to inject and how important it is to use the injection during an Adrenal Crisis.
Why Salt?

Why do people with Addison’s and adrenal insufficiency crave salty, acidic and sour foods at diagnosis, and then salt remains our “pick me up” when diagnosed? Professor Simon Pearce explains the connection between aldosterone, fludrocortisone and why you should always listen to your salt cravings.
Coronavirus Vaccines and Adrenal Insufficiency

Everyone with a steroid-dependent adrenal condition should get the coronavirus vaccine and boosters to reduce their risk of getting coronavirus. This is because people who are steroid-dependent are at increased risk of needing hospital care if they get coronavirus, due to the risk of adrenal crisis.
Novel Coronavirus (COVID-19) - 02/10/2023

Our medics have been keeping an eye on pandemic developments. 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!
Addison's & Adrenal Insufficiency: Advice for Dentists

The ADSHG guidelines offer illustrative guidance for major and minor dental procedures. It is important to recognise the physical stress of any invasive dental procedure and to ensure that adequate glucocorticoid cover is provided for steroid-dependent patients.
Surgical Guidelines

The ADSHG surgical guidelines are intended for the information of your medical team or your dentist and have been developed by our Clinical Advisory Panel.

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