An Author's Journey to Diagnosis of Hypermobile Ehlers-Danlos Syndrome, hEDS

"You can't slay the beast if you don't know what it is."

This is what I say when someone asks me about pursuing a diagnosis of any kind.

It's not easy to be completely vulnerable and admit to the world that your body is defective, that it is being destroyed from the inside out, and that there is NO cure.

Even worse is discovering that most professionals in the health industry have no idea what hypermobile Ehlers-Danlos Syndrome is or how to treat it.

My journey to find out what was wrong started over 15 years ago, though I had symptoms even as a child. My ankles were weak and rolled easily. I was highly flexible, but the muscles were often not strong enough to bring me back to a stable position. I could do the splits. I could sit on the floor, legs in a V, forehead or the side of my face touching the floor. My thumbs curved backwards; back then they considered it double-jointed. Back pain, sensitivity to bumps in mattress, super sensitive skin. My skin is so sensitive I can feel the tiniest crumb in my bed. I used to laugh and say I had "Princess and the Pea" Syndrome.

In my thirties, I experienced a lot of lower back pain. I was advised to go to a chiropractor. And I did. BIG mistake! The chiropractor did manipulations I later discovered were dangerous for someone with hEDS. He didn't know. And I did what I was told. I was on the chiropractor merry-go-round for over a year--and I was in constant pain. Some days I could barely walk. When I stopped going to the chiropractor, I got better. Not cured, but far less pain. I'll never go back!

Some people have a mild form of Hypermobile Spectrum Disorder, often with little pain and no dislocations. At the far end of that scale is hEDS, and that affects every part of your body. My collagen is defective. I liken it to knitting a blanket and dropping stitches along the way. My skin is stretchy, I scar easily, I bruise easily, and my joints can dislocate any time.

As you can imagine, when dealing with something like this and all the testing that's needed, it affects every part of your life. hEDS has reduced my mobility. I can walk but not long distances. I need to sit with my legs raised as much as possible during the day. I also have dysautonomia, common with hEDS, and that can be scary. I've now had a number of fainting episodes. The first time it happened, I ended up in the hospital. Dysautonomia also makes my body temperature control go all wonky; it looks like a hot flash but worse because it doesn't turn off for hours sometimes.

The good news? EDSes of all kinds (13) are now being researched around the globe, and the most helpful website for information is the Ehlers-Danlos Society. A couple of years ago there were several breakthroughs in EDS research, and new criteria and diagnostics emerged. Out of the 13 types, only one is not easily identified by a marker--and of course, that's the one I have.

hEDS isn't easy to diagnose if you don't know what to look for. Thankfully, there's a diagnostic checklist that can help. If you suspect you or someone you know has hEDS, please bring this form to your doctor. If you meet the criteria, you'll have your beast.

As you can imagine, hEDS has affected my life in ways I wasn't expecting. I'm 56, a bestselling writer with numerous plots sitting on my computer. I experience brain fog and extreme fatigue during the day. I cannot write in a fog...so my work has suffered.

But here's the thing...

Writing fulfills my soul like nothing else, so I will continue to write when I can. I still have dreams I want to pursue, goals to fulfill and a television crime series script to finish. And I will pursue them, because I have always said: "Dare to Dream...and Dream BIG!" That has been my motto since my first book was published.

So if I need thumb splints, wrist splints, ankle splints, knee splints etc., and mobility aids like a cane and a scooter, then I will use them because that improves quality of life. And QUALITY of life is what it's about, not quantity.

There is still a lot I need to learn about my beast, hEDS, but I'm getting there.

So if you were wondering where I've been or what I'm doing, now you know. The main reason why I decided to blog about something so deeply personal is to educate others about EDS. The more we know, the more people will be helped.

Live a good life, be kind to those less fortunate, love those you love.

~Cheryl