After a long period of illness, In March 2014 aged just 10, our son Ollie was diagnosed with Addison’s disease, primary adrenal insufficiency.
Addison’s disease is a rare and life threatening condition where the adrenal glands cease to function, in Ollie’s case the cause is autoimmune. The adrenal glands are responsible for producing vital hormones including adrenaline, and steroids aldosterone and cortisol, without which, the body can not function. People with Addison’s require life-long daily steroid replacement medication taken at set times throughout the day, this is essential for life. And in times of illness, injury or stress, higher doses must be administered by emergency injection immediately to prevent adrenal crisis; a life-threatening situation requiring immediate medical attention.
Approximately only 1 in 10,000 people are affected with Addison’s making it 300 times rarer than diabetes (another endocrine condition). Due to its rarity, medical professionals may only see a hand full of Addison’s cases throughout their career, if any at all. Unfortunately there have been cases where the condition has been misdiagnosed or not identified soon enough.
The Addison’s Disease Self-Help Group (ADSHG) has been supporting people with Addison’s disease or adrenal insufficiency and their families since 1984. ADSHG is a registered charity run by many volunteers and trustees with the condition themselves and relies on receiving funding from subscriptions, legacies and donations in order to help them support their members whilst raising awareness and better medical understanding of this rare condition.
Many people with Addison’s can still live full and active lives. JF Kennedy managed to run a country with the condition! Ollie hopes to become an Astrophysicist and even applied for work experience with NASA last year (and got a response)! The way Ollie has managed to balance life with his condition is truly admirable. Despite some niggling side effects, he never complains, he is one of his school’s highest performing students, and he touches the hearts of everyone who knows him. He is an inspiration, our inspiration, and we believe his condition has shaped him into the conscientious, caring and sensible young man he is today.
ADSHG has been a huge centre of support to myself, my wife and many others in times of need. It has provided a platform for us to meet and confide in others who truly understand, and it has provided essential information and guidance to help us support and manage Ollie’s illness better.
ADSHG relies on fundraising events like these and we would be extremely grateful for any support, no matter how small. Many thanks and much gratitude in advance. Namaste 🙏