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To the Person Who Just Googled 'Adrenal Insufficiency'

So you or your loved one have been diagnosed with adrenal insufficiency?

I guess I am correct or you wouldn’t be here, feeling the way you are, tapping away at Google and desperately trying to make sense of it all.

This was me two years ago, and I wish I could have read this then.

Are you¬†feeling like your world is collapsing around you? You can’t breathe or sleep for worrying and have no idea what the future holds.¬†The whole world seems oblivious to you and your new diagnosis and to be truthful, you have never heard of it, either.

Please stop! Take a breath, and let’s go through this together.¬†Yes, this is a life-threatening disorder, but it is all going to be OK.¬†I write to you as a mom, so the subject here is the most important thing in my life: my daughter Molly. I want you to know from the beginning, you are not alone.

What is adrenal insufficiency?

It means that the body does not produce enough of the stress hormone called cortisol. It is a steroid and one of the hormones the body needs daily to survive. You cannot live without it.

We as human beings all have the fight-or-flight mechanism inside us (a rush of cortisol and adrenaline) which prepares us to fight or flee. People with adrenal insufficiency do not have this cortisol rush, so if they are in a car accident (or any type of severe trauma) they may have an adrenal crisis and need an emergency glucocorticoid injection.

Even if you read no more of this, just always be your own advocate.

There are different types of adrenal insufficiency, primary and secondary.¬†My daughter’s condition causes secondary adrenal insufficiency. This means that her adrenal glands do work, but are not told to release cortisol by the pituitary gland her brain.

Primary adrenal insufficiency¬†(also called Addison’s disease) is different.¬†This happens when the adrenal glands do not work.¬†Each¬†have¬†different causes, but both use steroid replacement medication.

To you and I, the doses, along with the chopping up of small tablets four times a day in order for your child to survive, may seem quite unscientific for such a serious condition. You would be right to assume this. You have to be aware that medical science does not seem to have progressed in this area in years.

Why do I spend my life raising awareness and support? Because Molly is ill.

Fourteen years without diagnosis has made her weak. Her body could not cope any longer. Had she been diagnosed as a baby she could be relatively healthy now. She could have gone through school, had her prom, had a good education, and had many friends. She could be at college now, working toward her future.

She uses a wheelchair and her chest is scarred from all the lung infections. She cries every night in pain. I have seen her go from a tiny little girl to this 17-year-old who cannot even walk, let alone go to school or have any social life.

People¬†say to me “Why do you focus on Molly’s adrenal insufficiency and not all the other problems she faces?”¬†Molly’s condition also causes no thyroid function, no growth hormone production, and she now has severe myalgic encephalomyelitis.¬†I concentrate on this one problem because adrenal insufficiency is the only thing I fear could take her away from me. And I’m scared.

Now please don’t despair, we all now know the risks. You cannot dress this up or play it down. It is serious.

For the other side of this, what I said about not feeling alone ‚ÄĒ the adrenal insufficiency patient, family and friend community is huge!

I felt so alone before¬†Molly was diagnosed. I had no diagnosis in¬†common¬†with anyone. That’s changed now.¬†I have so many friends now all over the world, we share good times and bad, and I class them as family.¬†You will find that every parent is an expert.

Molly often says, “Oh god Mom, are you discussing me again on the internet?” I always laugh and say “Yes! Yes I am!”

I thought I had found all the friends I needed in my life, but I have so many more now! And I know they will be lifelong friends. Because we are all in the same boat, we all love someone with the same thing, we all want them to have the best care and to be the safest they can be.

I  was utterly devastated by the truth that my precious little girl has been diagnosed with a lifelong and life-threatening condition I did not understand. I felt absolutely shattered.

Two years later, I finally realized that while this is true, I cannot live in fear of this. I cannot wrap her up in cotton wool; her risk is more than anyone else’s, yes, but we all take risks every day.

Nothing has changed; she is still the same person she always was, but with an extra sprinkle of gold dust which we need to keep an eye on.

Follow this journey on Rachel and Molly’s¬†Facebook page.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.