The Addison's Disease Self-Help Group was founded in 1984 by Deana Kenward on her dining room table, following her diagnosis of Addison's disease. Over the following years, the organisation has grown and become an internationally recognised patient support and advocacy group with a flourishing, engaged adrenal insufficiency community.

Our History

It all began when Deana wanted to find out more about Addison’s following her diagnosis. She went to the library and wrote to every magazine she could think of only to find out there was nothing. In the end, she wrote to Katie Boyle at the TV Times who put her in touch with Contact A Family, a London based charity, who printed Deana's letter in July 1984.

The response to Deana’s letter was better than she could have hoped for when the postman delivered over a hundred letters from people who also lived with Addison’s. Deana answered each and every letter by hand asking if they would like to participate in a support group. Fifty people chose to join and the Addison's Disease Self Help Group was born. Deana carried on doing everything by pen and ink on her dining room table until Christmas when her Mum bought her a typewriter. Her lifetime friend, Lynda Harris, was a Lioness (a female member of the charitable Lions Club) and, the following year, Lynda’s branch of the Lions Club presented Deana with a word processor. In April 1992 Deana posted out the first ADSHG newsletter after obtaining the assistance of one of the leading adrenal specialists in the UK, Professor Mike Besser, to answer medical questions in the newsletters.

The Lion Club's donation of a word processor to Deana, enabled her to send typewritten letters to members.

In 2001 Nick Willson was the first member to offer help and, over the coming years, his invaluable IT skills would prove pivotal in establishing the group’s website, forum and online presence. Another early member, Alan Lack, designed the group’s first logo with clasped hands for their headed notepaper. The logo went on to be developed to the one you see now, based on the shape of an adrenal gland.

Deana organised many meetings, initially in her home town of Guildford and then nationwide, where people with Addison’s, their friends and families could get together to share experiences. These were often augmented with the input of experienced endocrinologists and endocrine nurses and, in 2003, the Addison’s Clinical Advisory Panel, led by Professor John Wass, was formed.

Katherine White joined the group in 1999 and, together with Sarah (Baker) Spain, co-authored ‘Living With Addison’s Disease: An owner’s manual for individuals with the disease’ and their booklet has come to be recognised as the definitive publication on the subject (the booklet was later updated as ‘Living With Addison’s Disease: A Guide For People With Addison's, Supporters And Professionals’ in 2019 by Sarah Spain and Professor Simon Pearce). Katherine went on to write and contribute to innumerable invaluable patient information leaflets that became the template for all ADSHG publications. She inaugurated the first ADSHG Annual General Meeting & Medical Lecture in London in 2002 an institution that has continued for twenty years. Katherine was elected Chair in 2004 and remained in that post until 2018. She forged links with the Society for Endocrinology(SfE) and the ADSHG stall became a recognised feature at SfE events up and down the country and in Europe too. Katherine worked indefatigably for the furtherance of the ADSHG and her propagation of the Emergency Injection Kit and advancement of the steroid alert card has been, quite literally, life-saving.

The ADSHG was awarded charitable status in 2004. In 2018 the charity appointed permanent staff having previously been run entirely by volunteers most of whom have Addison’s themselves. In 2019, with the assent of the Charity Commission, the ADSHG became a Charitable Incorporated Organisation (UK registered non profit).

Through the inspiration of Deana's hard work and dedication, the Addison’s Disease Self Help Group now has over 2,100 members and 30,000 social media followers worldwide. The charity has continued from strength to strength ceaselessly seeking to expand the aid and information we are able to provide to people with Addison's and those who support them. In 2012 Deana Kenward was awarded an MBE (Member of the Order of the British Empire) in recognition of her outstanding contribution to the charity, the Addison’s community and her exceptional example to others

Meet our Founder - Deana Kenward MBE

Get Involved

Since 1984, we have been powered by people. We couldn't continue our work without the support of the community - together we are stronger.

• Please help us in our mission and donate to fund our vital work and research grants
• Become a member
• Help us with fundraising
• Become a volunteer

Want to read more? One of our longest standing volunteer's Noel Hawks, charts the story of the Addison's Disease Self-Help Group's founder Deana Kenward. From her diagnosis, the journey of starting the charity, until her MBE award and current retirement.

Meet our Founder - Deana Kenward MBE

Are you a member of our charity? 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.

Join the ADSHG 

Say hello! Follow us on X / Twitter, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube.