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The Irony of Rare Illness Day
So yesterday was Rare Illness Day, and unfortunately due to my own rare illnesses, I’ve been too unwell to write the posts I hoped to write about having a rare condition, Adrenal Insufficiency and Human Growth Hormone Deficiency.
What is Adrenal Insufficiency?
Adrenal Insufficiency is an when the Adrenal glands fail to function correctly. The Adrenals produce an essential hormone, “the stress hormone” called Cortisol, and without Cortisol, the body would go into crisis and die.
Anyone with Adrenal Insufficiency will be dependent on “daily replacement steroids” to replace the Cortisol which is needed. There are three types of Adrenal Insufficiency, Primary also known as Addisons Disease, Secondary and Tertiary Adrenal Insufficiency.
At the moment I have a diagnosis of Secondary Adrenal Insufficiency. It took a long time to get tot his point, for a year I was told I had Addison’s Disease and then I had a letter stating I had tertiary AI, but 2 1/2 years after collapsing and becoming very unwell I can safely say it is secondary Adrenal Insufficiency.
At the the end of the day, it really does not matter the cause of the AI, Adrenal Insufficiency is rare and uncommon and everyone with AI need replacement steroids to live each day.
Likewise those who are unfortunate enough to have the illness, often suffer with difficult symptoms day in day out. (Some don’t) However through my experience talking to the thousands of people around the world with this condition, I can honestly say that many suffer on a regular basis.
Some Adrenal Insufficients have chronic exhaustion and fatigue, which is most likely due to the constant under and over replacement of steroid medication. We cant replace the body with tablets in the same way the body would – ie the circadian rhythm, so we will always be unwell to some extent.
When placed under extra stress, such as an infection, or a sudden shock, people with AI can begin to experience dangerous Adrenal symptoms which unless treated urgently can lead to an Adrenal Crisis and death.
Since becoming a part of the online community, I’ve had five friends die from Adrenal Insufficiency and many others have been in hospital, A and E, bed or housebound. The text book says replace the body with tablets and an Adrenal insufficient can live a “normal life”. Well that’s not the case for me, nor is it for many of my friends.
A rare condition is one which is not often talked about, one that so few people have that it is not so well know, not as well known as lets say, diabetes or Asthma, yet adrenal Insufficiency is just as and often more fatal.
I live with a life threatening illness every day and without careful management I could easily end up in Hospital having a cardiac arrest. I have to be careful and make sure I take my medication on time. Not only that, I have to double up when I have a infection, yet I don’t always know if I have an infection, and that leads to being very unwell.
I find my condition very difficult to live with. I’ve heard and researched of techniques being used to help improve Adrenal Insufficiency (for example the Adrenal Pump). This enables steroid replacement to more accurately mimic the circadian rhythm. Those people I’ve spoken to who have been fortunate to trial this pump all say that the pump has improved their lives. They are still at risk and still have bad days, but a lot are able to work and live semi normal lives.
I dream of being able to use an adrenal pump. The illness is rare and when illnesses are rare, research comes in slowly and so does funding and pharmaceutical interest. Sadly it’s true. It’s very hard to get the adrenal pump in the UK and around the world.
Many Endocrinologists believe that the adrenal pump should be used only for those who cannot absorb steroids. You have to have tests to see how well your body absorbs your medication. I don’t believe mine works well and maybe due to that I may one day get the pump, however I believe the pump should be available to all people with this rare condition who would like to have it.
Yes it’s expensive but having a regular cortisol level would save so much money and time for example continuous visits to A and E and hospital stays. Quite a few but not every person I’ve spoken to using this pump say it has seriously reduced hospital stays. Medical research carried out in Manchester also concluded that the adrenal pump saved money for those with Secondary Adrenal Insufficiency due to less visits to hospital while using the pump.
Ironically, all too often those of us who would like the chance to get well and improve our rare condition, are often too unwell to fight for this.
Ironically Rare illness day was on the 29th of February, a day that only comes around every four years..which is pretty rare.
So instead of writing all the posts I’d like to write, I will end here and say that I will keep fighting to try and get my Adrenal Insufficiency better managed, to stay out of hospital and to be able to have the best treatment for my condition.
2016 is my year to try and get the Adrenal pump. I will keep doing what can as I rest and lay in bed most of the day. I will make calls and visit the GP and wait for my referral to a new Endo in hope that he or she will help me in my pursuit to have a semi normal life once more, not just for me but for my child because……
Rare Illness Affects Families.
Rare illness Affects Parenting
Rare Illness Affects Marriage
Rare Illness Affects Children
Rare Illness is a hard way to live and all too often many people are unaware that it even exists!
One rare disease that I came across a few years ago is mesothelioma. Mesothelioma is a rare cancer. linked to asbestos exposure. There are few effective treatments for this illness.
Sadly I have a family member in Australia who recently passed away from Mesothelioma. Mark, my dad’s cousin was exposed to asbestos in his employment. Mark left behind a wife and two children and the effects of Mesothelioma was awful. He was very very unwell and the cancer sadly took his life in 2017.
There are many rare conditions which affect individuals and families and today it is important to take the time to thin about these and pay a little thought to rare illness, rare illness month and think of those who suffer daily from rare conditions which make life difficult and sometimes take life away.