Some of the ways I can bend my body could be and have been considered party tricks to many people.
I can bend my thumb back so it touches my forearm; my legs bend backwards; I can turn my head so far around without moving my body, and look behind me, like an owl; I can lay my palms flat on the floor while keeping my legs straight. I can still do the splits, all kind.
Now I always knew it wasn’t normal. But I never knew until a few years ago that it was something I should not be doing. Yet I had been doing it my entire life. It had been part of my life and career for 25 years as a dancer and gymnast.
But it damages my joints and connective tissue too much, and my body will not bounce back like it does for most people, because I have Ehlers – Danlos Syndrome, an abnormal mutation of an unknown gene. This causes a fault in the collagen, which is the glue that holds our bodies and organs together. It becomes weak and fragile, affecting the entire body.
Collagen is found in over one third of the human body, meaning that in Ehlers-Danlos Syndrome, everything is compromised as a result of the mutation.
EDS, as it’s often called, is a collection of heritable connective tissue disorders. There are thirteen different sub-types, each with unique characteristics. But all share symptoms that are joint and skin related. People with EDS have joints that are hypermobile, loose and unstable, prone to frequent dislocations and subluxations, able to move beyond the normal range, and sometimes have skin that is stretchier and saggier than most and tears, bruises or scars easily.
I have been classified with hypermobility type of EDS, which means I also have a significant amount of daily pain.
A year ago, I would estimate my pain level was around a 7 on the 1-to-10 pain scale, and that was only as long as I was taking medication for it. Without medicine, my pain level went well past the level of “10”. Even on a good day.
I have had several surgeries since, which have helped structurly. And I am learning, through physical therapy, that getting stronger can help me manage my pain to a certain degree.
However, I must maintain some type of exercise/physical therapy constantly. If I do not, I digress within less than two weeks and can barely walk without some type of pain killers.
My children have inherited EDS from me and have varying levels of pain and complications from EDS as well. Especially my youngest.
I was born with EDS and have lived with the consequences and pain of it for nearly four decades, but I was only diagnosed two years ago.
This is so very common for people with the disease. Diagnosis typically takes several generations, years of doctors visits, dozens of different specialists and several misdiagnosises before it is finally discovered. Once I was finally diagnosed, after years of searching, was the moment we truly learned the full scope of both mine and my youngest son’s condition.
Now when I say my youngest son, I am not talking about a little boy. My boys are men now. So my baby boy is 23 and 6 feet tall! But you would not believe how bendy this guy is! (That’s slang for us EDS people). I am always yelling at him about how he sits and twists and how he WILL regret it later in life.
Anyway, my son, spends a great deal of time on his feet at work. He had been complaining about how much his left foot hurt. My husband also noticed how horribly swollen my son’s foot was. So I referred him to my AMAZING Ortho. After having imaging done, the Ortho said that he had the highest arch in a foot EVER seen. Though this is not common in EDS, it is not unheard of. Typically it is found that those with hEDS have flat arches (like me). Suffice it to say, my son is an anomaly like his mother.
So, in the end, my son had some special shoes designed which will help his foot, which will help his knee, which will help his back, etc. Those of you whom know me and know the story of my youngest and his back, know how even more incredible this is for him! (I’ll leave that story for another time for the rest of you)
So now you have it. The first (tiny) part of my story. Don’t worry. There’s more. Soooo much more!
It’s Dysautonomia. There’s always more!
And it never gets boring!
Thanks for reading guys!
2 Comments Add yours
Great to read your post. At 49 I was diagnosed at the beginning of the year. It’s good to hear about your experiences.
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I was also 49 when I was finally diagnosed. I can’t believe I’ve lived this long with it. I look back at my life and have all these “A-ha” moments now. It all makes sense now.
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