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Rare Illness Day And Adrenal Insufficiency
It’s Rare Illness Day! As a member of the rare disease and disorder community I wanted to share this awareness day with you and speak out about rare disease day and Adrenal Insufficiency an illness which I live with everyday.
This year February 28th marks Rare Disease Day, an awareness day to share the importance of rare disease research and how rare diseases affect those in your own community. In Europe, a disease is considered rare when it affects fewer than 1 in 2000.
I think the more research that is done the better! I wish more research would be done into Adrenal Insufficiency and especially into alternative and improved treatments. Since going onto the Adrenal Pump my life has improved. I’m still unwell but a change in treatment meant more quality time with my family and improvements which are worth it.
Adrenal Insufficiency, both primary AI and secondary AI is a rare disorder throughout the world. Affecting the adrenal glands and production of hormones, adrenal insufficiency causes many symptoms including abdominal pain, fatigue, nausea, low blood pressure, and dizziness. There is no cure, and so this is something I will have to deal with the rest of my life.
Living with Adrenal Insufficiency is dangerous when my cortisol levels get too low. Cortisol is the stress hormone and as stress changes in the body so too does the dose of medicine I need. This is very hard to monitor and places someone with Adrenal Crisis at risk of Adrenal Crisis and death.
Due to the rare nature of Adrenal Insufficiency and Addison’s Disease (Primary AI) there is a huge lack of research, however I am grateful that some is being done and I’m really pleased that my health although not perfect is stable enough that I am spending much less time in hospital and more time in the home.
The good news is that patients and Endocrinologists are working together to try and improve the medication and treatment for patients with Adrenal Insufficiency. It’s a slow process but things are being done a little at a time.
I guess if the illness was not rare, much more would be done but I and many others with the condition are fighting and hoping the future for AI patients will be much brighter.
So let’s take a moment today to share and spread the word about Rare Disease Day!