Ehlers-Danlos Syndrome

Just what is that strange word I put up there in my title? It may be the answer that I have been looking for all these years. It may be the “thing” that will make my life make more sense. The “Aha” in the mystery of what has happened in my body all my LIFE. The answer to the Fibro and CFS that I’ve endured for decades at an ever-worsening rate. It may be the answer to “WHY?”

“Why are my fingers so crooked, Mom?” I would ask. “I don’t know, dear, it’s just how you were born.” I may have shown off my incredibly flexible joints at that time because those fingers, as crooked as they are could move into contortions that would make some feel nauseous. the rest of my body is and was hyper flexible from the very start.

“I have these shooting pains that happen randomly through my body, Mom. What is that? Is that normal?” She would typically reply. “I don’t know, but it could just be your mind playing tricks with your body.”

“Dr. why am I losing so many babies? Is there something wrong with my body?” The Dr.’s answers went something like this: “We have run all the tests to see why these miscarriages are happening to you and we see nothing to be alarmed about. Maybe it’s just your body’s way of getting rid of embryos that have something wrong with them.” After losing Josiah and then three more pregnancies, the Doctors remained stumped as to why I was not able to carry a baby to term. They just couldn’t find a reason.

“Why do I have several organs that are malformed and not working like they should?” Shoulder shrug.

“I am just so tired all the time and feel like I just can’t function. My body hurts so badly sometimes I want to scream.” Doctors would imply “It’s all in your mind.” or say “We are diagnosing you with Fibromyalgia because of the chronic pain and Chronic Fatigue Syndrome because of your fatigue.” And then just give me a list of things I could try that may or may not work.

Finally, after years of suffering I think I had someone has given me a lead into what could very well be the answer!

Ehlers-Danlos Syndrome. A rare genetic condition that my cousin was diagnosed with a few years back. It usually runs in families and she was kind enough to send me links of information that I could gape at. I gaped because it described what I thought was quirks and deformities and odd qualities about myself and made it make sense. It was an “Aha!!” Moment. I am convinced that this syndrome is actually why things in my life have been painful, strange, and tiring since the beginning of my memories. All my life, I have felt that much of my pain was all in my head. When I would get sick, it was in my head. I felt like I had to explain that what I wasn’t just faking and that it wasn’t all in my mind.

Ehlers-Danlos Syndrome has some specific characteristics. There are a few different types of the syndrome and so the symptoms vary some from person to person, but there are more common symptoms which are taken by observation and put on a scale to narrow down the possibility of having it. Genetic testing can be done and I have been referred  to a specialist. I’ve waited a good long time and hope our health system can show me a favor by getting me in after waiting more than a year.

There is a test called the Beighton Scale, is a list to verify hypermobility of joints. It is said that if you can do a certain criteria of hyper flexible moves then you are officially at risk for Ehlers-Danlos syndrome. It is one of the main criteria for diagnosing Ehlers-Danlos Syndrome. I’ve done the scale myself and find myself with the score  of “Um Yah, you have this genetic condition.”

There are SO many of my symptoms that didn’t make sense before and now make sense that I am not even doubting, before genetic testing, that my ancestors handed down this lovely syndrome for me to enjoy and call “Fibromyalgia”. It helps make my life, my pregnancy losses and other things make sense right down to my crooked fingers and velvety skin! 🙂

Why is this important to know at this stage in my life? Well, it helps me know that I haven’t been crazy,  with all these things going on in my body. It wasn’t all in my mind. It wasn’t because I was an emotional mess. It is just that I have a genetic reason for it. My body was created in this way. It helps Dr’s know how to treat me and to know that there are certain things they should look at when I come in with a list of symptoms. This genetic condition messes with the production of collagen in my body and collagen is in every cell. It can affect many areas of the body in the organs, connective tissues and on.

Knowing that this is the Genetic Syndrome that has probably been with me all my life doesn’t make me freak out. In fact, it’s the opposite. I feel at peace. I was created and born for a purpose. God knew this long before I did. He knows my limitations because he allowed me to be born with them. He is in control.

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2 responses to “Ehlers-Danlos Syndrome

  1. thanks for sharing this……so glad for the peace you have found in learning about this. Love you !!!

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