Addison’s Disease Self-Help Group

Registered Charity Number: 1179825

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The Addison’s Disease Self-Help Group (ADSHG) is a UK based charity working to improve the lives of people with Addison’s disease, adrenal insufficiency and all who support them. Founded by Deana Kenward M.B.E. shortly after her own diagnosis in 1984, this year marks the 40th anniversary of the ADSHG which now works in cooperation with some of the UK’s leading adrenal specialists and the Addison's Clinical Advisory Panel (CAP) led by Professor John Wass. The ADSHG publishes a magazine, runs an online member discussion forum and has over 28,000 social media followers. The charity supports social meetings throughout the year and holds an annual event in both England and Ireland. The group publishes a range of medical information leaflets such as Surgical Guidelines and offers Awareness training for groups like Paramedics.

Addison’s is a rare disease affecting adrenal gland function and can be life-threatening. It affects approximately 1 in 10,000 people, meaning an estimated 300 to 350 new cases are diagnosed each year across the UK, making it roughly 300 times rarer than diabetes.  Life-long treatment with replacement steroid hormones is required and if untreated, it is fatal. Medication is usually taken several times daily at carefully timed intervals and individuals must also know how to administer an emergency hydrocortisone injection to prevent a potentially fatal adrenal crisis.The ADSHG is here to support everyone affected by Addison’s and adrenal failure through shared experience and training, to connect our members and the professionals that enable us to live our best lives, to fund and advance vital research and to promote broader medical understanding and effective management of this rare condition.

Please visit www.addisonsdisease.org.uk  for more information.