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by Wendy J Hall | October 13, 2018
It’s not hard to figure out my inspiration for this book.
Of all the books I’ve written, this is closest to my heart. Why? Because I, myself was diagnosed with Adrenal Insufficiency in early 2012 after having had symptoms for year.
The call from the doctor about my low morning cortisol result and the need to see an endocrinologist changed my life and I was catapulted into a world of blood tests, imaging, new medications and basically having to learn a completely new language.
I am an adult. Imagine If this was your child? A child trapped in a body with a rare disease that often gets missed by doctors, often with catastrophic consequences. Read Kendall’s story to read a true-life story of this.
Interestingly, whilst this book is incredibly meaningful to me, it actually proved to be one of the hardest to write and I myself gained a lot of perspective into the illness. I realized that it is one of the most complex rare illnesses.
An avid researcher, essential for survival with this disease, I found myself wading through medical articles and textbooks. ‘
Whilst the basic problem is that we cannot produce cortisol, a hormone vital for our bodies since it regulates all the key body functions such as blood pressure, blood sugar control, heart function and so on, there are so many names for it that it’s easy to find yourself caught up in all the different names. That’s why calling it AI is so much easier.
Many, myself included, get trapped in trying to categorize ourselves. Do we have Primary Adrenal Insufficiency, sometimes known as Addison’s Disease or is it central, which is hypothalamic failure and can be further sub-classed as secondary or tertiary. Some have a combination. Some people get so hung up on these terms that they can’t see the wood for the trees.
The only difference is that with some of the types, there may be some additional medications necessary but the bottom line is that steroids are needed.
Just the word ‘steroids’ conjures up images of athletes and stories of being disqualified from the Olympics after testing. But, for those with AI, steroids have a completely different function.
There’s no need to mince words here: without steroids, AI sufferers could and do die! Unlike, people who take steroids for inflammatory conditions, for us, they are life-sustaining.
Imagine being in this position with a child?
Steroids, themselves, wreak havoc on the body, causing bone loss, mood swings and a host of undesirable side-effects. The cure can be just as bad, if not worse than the disease itself (a message very succinctly delivered by Joe, an admin of the Living With Addison’s Disease support group with over 6000 global members (https://www.youtube.com/watch?v=2aRvWAEVSzo&t=469s).
Just getting the dose right can be a challenge since every single human being metabolises medication at a different rate whilst doctors try to fit us into ‘boxes’ and use lab results. The thing is AI sufferers do not fit into these delineated frameworks.
We are all different. Doctors have perhaps 1-2 hours on this rare disease at medical school so they cannot be expected to have a broad knowledge which means patients need to be ultra self-self-informed In order to survive but some doctors see an educated patient as a threat and sadly this results in death sometimes.
The fact is the illness is invisible since steroids give people a very deceptive glow but this can be deadly and I myself have experienced close death thanks to a doctor who thought I looked to healthy to be sick.
A parent with a child diagnosed with this disease faces even more challenges than adults - non-stop worry about adrenal crisis, making school teachers aware, putting your child on the school bus every morning, not with a backpack just containing textbooks but also containing a life-saving injection kit.
A child could go from being fine to being in deadly crisis within hours so awareness is vital.
That’s where the inspiration for the approach to the book came from: presenting in through an educated child raising awareness at her own school. Young children are very smart and resilient and they can understand far more than we give them credit for.
I did my best to keep the terms simple, whilst including necessary anatomical information and the key areas. I kept it upbeat as my aim is to demystify the illness and almost make a child feel proud of their own knowledge.
I left some areas that would raise questions when reading the story. For example, I purposely didn’t cover the complex relationship between adrenaline and cortisol in the hopes that it could encourage some joint parent-child research.
I sincerely hope that this book can reach thousands of parents, relatives and most importantly children and show them that whilst this disease is dangerous, knowledge is power!