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My Life With Adrenal Insufficiency

Rare Illness Day And Adrenal Insufficiency

RARE ILLNESS

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!

Angela x

 

7 Comments

  1. Less than 1 in 2000 still makes for very many with this disease. I hope the research more on all diseases not just the ones with an over abundance of those effected. I’m glad they have some done research and were able to invent your pump which allows you a bit more quality of life. Best wishes and blessings to you!

  2. I know it must be a challenge for you to deal with the disease every day. I have diabetes, and although it is not a rare disease, it is quite frustrating to keep my blood sugar levels within the acceptable range. And to inject myself with insulin is not a pleasant experience. I do have a niece that has a rare disease called Lissencephaly which means she was born with a smooth brain. Her every day life is seizures, dysmobility of her gastrointestinal tract, and being confined to a wheelchair. Although there is no cure, we try to make life for her more comfortable so she can still enjoy simple things like any ordinary child would.

  3. I didn’t know about this rare desease. ANd it is great that thre people giving awareness to something like this.

  4. Living with a chronic disease is a challenge, but with more awareness comes more research. Glad to see their is a Rare Illness Day to help bring that awareness to those of us who don’t know what it is like.

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