The only good thing about having Ehlers-Danlos Syndrome?
I can lick my own elbow!
Listen for the Zebras....




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Saturday, March 3, 2012

Ehlers-Danlos Syndrome and Stryder

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I have been going back and reading on Stryder's history and this little boy has gone through so much.
We started our journey when he was pretty little and they thought maybe he had cystic fibrosis. After that we learned that he should have been speaking and he wasn't. We have been told he had cancer and Maple Syrup Disease, both they say are still possibilities. I believe that it is the EDS that is making all these tests come up different than most.

Stryder's collagen is defective. That's the basic definition of Ehlers-Danlos Syndrome. Some people with EDS show very little signs, while others have major complications. Stryder is on the extreme end and while the Dr's believe he has many problems, I feel that it is all because his collagen is weak. His little body is always repairing itself, rendering the blood test results low or high in areas where "normal" children shouldn't have. Collage is the most abundant protein in the body and provides strength in tissue, including the heart and blood vessels and eyes. This means that Stryder can have an aneurysm anywhere and we have been told by several Dr's this is very likely because of how "bad" his collagen is.

Stryder has been tested for Vascular EDS, which came back negative. There are five other types and some do not have genetic testing available just yet. We have been in contact with a Dr. over the internet and while she cannot diagnose over the net, she believes Stryder has the classical type. We will have to make trips to Baltimore every six months for treatment and to get a plan of action.

Because Stryder has had so many problems in his short life, it is believed that he does not have a long life span, but really, who is to say that. We have been through a lot. I know that hearing that your son does not have cancer is supposed to be a good thing, but what happens when your child has all the symptoms of cancer and yet there is no treatment and no cure. It's not a good thing anymore.

EDS is not always fatal and in truth, hypermobile EDS is almost never fatal.  There is chronic pain and a few other problems, but really it's not life threatening in most. Unfortunately, some EDS patients seem to have a lot of problems and a lot of  life threatening problems with the heart and bowels and scoliosis, which Stryder is starting to show because his muscles cannot hold his back straight.
We are still testing and there are still a lot of unanswered results. The geneticist at the Mayo wants to test for the other types of EDS, although they are only 50% accurate. When we were there, she said that we shouldn't do them, but now she says that he has so many positive signs that he should. I do not want to take the chance of the test coming back negative but there is still a 50% chance he did have it. We know what his problems are and we are aware that he has a lot of inside problems as well, we deal with them as they come-that's the best we can do.

This week has been pretty normal. There have been no dislocations, no seizures and nothing major wrong. We are blessed and it's times like this right now that I believe Stryder will live a long and happy life!

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