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
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
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
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
We keep you updated with inspiring stories on our ADSHG blog.
"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
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
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
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
It's important to remember you're not alone in experiencing a range of emotions after adapting to lockdown life. 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
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
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
Marie-Helene was unwell throughout her pregnancy, but her symptoms were dismissed as a normal part of pregnancy until she was close to death. Read more
Jan shares with us her inspirational story of her assistance dog Rhea, trained to recognise low cortisol levels. Read more
What do Stephen Fry, Craig Revel Horwood and Delia Smith all have in common? They all donated recipes for the ADSHG charity cookbook! Here Rachel tells us how her friend and former ADSHG trustee Sue Chambers undertook the challenge of producing and publishing a charity cookbook for the ADSHG, despite Sue's terminal cancer diagnosis. Read more