Preparing an emergency kit is something every person with Addison's or Adrenal Insufficiency should do once they have a diagnosis. Kits are sometimes provided ready-made by medics and can also be purchased online. Here we help you create your own emergency kit in seven steps. Read more
Meet Adam - the AI Warrior. After diagnosis, Adam created his character The AI Warrior to give people an idea of his daily needs and to spread awareness. His aim is for his character to be added to Fortnite and reach the Addison's community, creating a team of strong rare disease warriors. Read on for Adam's story. Read more
The COVID-19 vaccination campaign has kicked off - but what does it feel like to receive the COVID-19 vaccine? People with Addison's and adrenal insufficiency share their experiences of receiving the vaccine. Read more
Vinoj is an engineer by day and a spoken word and hip-hop artist by night. He was diagnosed with Addison’s Disease in September 2019 after experiencing an adrenal crisis and nearly a year of battling with its symptoms. In 2020 he released “Temple to Castle” - a song written about his journey with Addison's. Vinoj shares more about the song and his journey with Addison's. Read more
We keep you updated with inspiring stories on our ADSHG blog.
Suzanne tells how she volunteered to participate in the ULTRADIAN study at Bristol and her experience of testing U-RHYTHM, a medical wearable device to measure hormone levels, such as cortisol, in the body over the full 24 hours. Read more
Researcher Dr Thomas Upton updates us the development of U-RHYTHM, a medical wearable device to measure hormones, including cortisol levels, in the body over the full 24 hours, as part of the ULTRADIAN study at Bristol. Read more
A survey of over 600 people with adrenal insufficiency has found that around 80% of respondents were uncomfortable about the relaxation of COVID-19 related restrictions that began in England on the 19th July. Read more
Lynsey who has Addison's used her skills as an interiors and still life stylist to create a colourful photoshoot to explore one of the symptoms Addison's: craving salt. Here she shares with us the story behind her pickle addiction photoshoot. Read more
It's important to remember you're not alone in experiencing a range of emotions as restrictions begin to lift. Read more
To mark Addison’s Disease Day 2021, we speak with Professor John Wass, the Professor of Endocrinology at Oxford University and chair of the Addison's Clinical Advisory Panel. Read more
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. Read more
Associação Brasileira Addisoniana (ABA) report on the success of making emergency injection kits available in Brazil during the pandemic, with the support of the ACT Panel Read on to learn how you can support their vital new campaign “No more waiting, hydrocortisone and synthetic ACTH NOW”. #HidrocortisonaJÁ, #VoltaACTH #AbaddisonBrasil Read more
We speak to Dr Sam Westall, member of our Clinical Advisory Panel (CAP), to learn more about his work looking into ambulance alert systems and improving emergency care for patients with adrenal insufficiency. Dr Westall shares his research, as presented at The European Congress of Endocrinology (e-ECE) in 2020. Read more
A new patient leaflet has been released to provide more information on fasting for Ramadan if you live with adrenal insufficiency. We speak to Endocrinology and Diabetes Specialist Registrar, Shazia Hussain to learn more about this new vital patient resource, created in collaboration with ADSHG, The Pituitary Foundation and CAH Support Group. Read more
Kristian was diagnosed when he was 16 years old. Now 25, he shares with us how he's adapted to life with Addison's and how this determination has influenced his career in the creative arts. Read more
"My Rare Disease" podcast creator Katy shares the inspiration behind starting this fantastic awareness podcast, and we catch up with Sophie-Louise about her episode discussing her experiences with Secondary Adrenal Insufficiency. Read more
Liam was diagnosed with Crohn’s disease aged 10. After years of steroid medication to control his Crohn’s, a diagnoisis of Addison’s disease followed. He shares his story of the life-changing events that led to him raising much needed awareness of these conditions. Read more
After the success of last year's Christmas card competition, we brought back our popular charity competition this year! Thank you to everyone who entered! We put the cards to our ADSHG members to vote for their favourites and the results are in (and on sale now!) Read more
Rachel tells us the story of her pregnancy from fertility treatment to welcoming her son into the world - all whilst managing her adrenal insufficiency. Read more
Helen Reddy, the singer, actress, and activist shot to international stardom with her 1970s hit “I Am Woman”. At the height of her fame in 1976 she was diagnosed with Addison’s, aged 35. We were honoured to interview Helen about her Addison's for our magazine in 2009. We remember this inspirational woman by looking back at her insights into life with Addison's. Read more
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? Read more
Thanooshan was diagnosed with Addison’s Disease in 2018, 3 days after after going into adrenal crisis. Less than a year later, he began his law degree at the University of Leeds. Read about this member's experiences of balancing study with managing his new health condition. Read more
Kerrie Grounds, Lead Endocrine Specialist Nurse (ESN) at the Royal Liverpool University Hospital (RLUH) and her team of dedicated ESN’s have produced a video for patients with adrenal insufficiency covering steroid replacement during illness and the emergency injection, while they can't run their usual education sessions. Here Kerrie explains what inspired them to create this invaluable and informative patient resource. Read more
If you or someone you live with has Addison's or adrenal insufficiency, you might have some worries about going back to school or work. In our latest Twitter Chat, our expert panel answer your questions. Read more
International Addison's Day: Catch up on the highlights. On 29th May 2020 people with Adrenal Insufficiency painted social media blue purple and green, making new friends, sharing experiences and important advice with medics, family, friends and followers. Read more
During International Addison's Day people with Addison's or Adrenal Insufficiency around the world shared pictures of their kits as part of our #ShareYourKit campaign. Read more
On International Addison's Day, 29th May, we met for a Twitter Chat on the theme of 'Being Prepared - Getting Ready For Emergencies'. Here are some of the highlights. Read more
This International Addison's Day, Springer Publishing are generously giving you exclusive access to 'Advanced Practice in Endocrinology Nursing' book chapters on Adrenal Insufficiency. Read more
ADSHG Socials: Hosts share personal stories and injection practise in weekend watch party Read more
We have noticed lots of concern raised amongst our members about hospital admission during the times of COVID-19. We asked Dr Helen Simpson and Professor John Wass to give their perspectives on the questions we've seen asked by members recently. Read more
One of our longest standing volunteer Noel Hawks charts the story of the Addison's Disease Self Help Group's founder Deana Kenward, from her diagnosis to starting the group, to the time she retired from employment in 2009. Read more
Here is some helpful information from the ADSHG about being prepared if you fall ill enough to require hospital treatment. We hope you'll stay safe and well but we do recommend planning ahead. Read more
On 26 April, join the rest of the UK for the 2.6 Challenge and support Addison's disease! Many of our fundraising events have been cancelled due to the COVID-19 pandemic. But we're working harder than ever to support everyone who turns to us. This is where the 2.6 challenge comes in! From 2.6 to 26. It's your choice. Your challenge. And we need your support now more than ever. Read more
"There's a lot of bad news and worries in the world right now, so hopefully it's ok to share a positive story here... I was admitted to hospital yesterday afternoon." Valued member, volunteer and fundraiser for the ADSHG, Jennifer, shares with us her experiences of going into hospital for treatment during the COVID-19 crisis. Read more
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. Read more
On Saturday 29th February 2020, Rare Disease Day, we held another tweet chat this time answering questions on families, parents and carers. Read more
An update on changes to the forum Read more
On Tuesday 2nd October, we held another tweet chat this time answering questions on sport and exercise for those with steroid dependency. Read more
Pippa explains what made her most recent emergency hospital admission, with gastroenteritis, a more smooth and successful inpatient experience. Read more
The weather was kind. The sun shone. And our 20 amazing #TeamAddisons runners pounded around Central London in aid of Addison's Disease. Read more