Wednesday, November 26, 2008

Ehlers-Danlos Syndrome

I learned a couple of things today. First, it is highly likely that Katie does indeed have Ehlers-Danlos Syndrome. Why do I think this? Because I found out this morning that my cousin was diagnosed with it while she was in the military a few years ago. The fact that it is an inherited genetic disorder, and I have a close blood relative who has already been diagnosed with it, means I probably passed it on to her.

Second, the method used to test my cousin for the disorder is not something I am looking forward to having done to Katie. How did they test her for it? With a skin biopsy. They'll most likely cut a small piece of Katie's skin off to look at under a microscope. They may also do a blood test.

Not that I want to, but now I'm wondering if I should have myself and the other girls all tested, too.

8 comments:

Khadra said...

wow, that sounds a little scary. I read through the link. Im so sorry, I hope you find she doesnt have it.

Tracy P. said...

I'm glad you caught it early--way to be on the ball, Mom!

Happy Thanksgiving to you and your family!

Heather said...

Sorry to hear that Melodie. I hope you get some answers soon though. I imagine the earlier you can get her diagnosed, the better for her. (((HUGS)))

Anonymous said...

EDS testing can only test for the more severe form of the condition (the vascular). The remaining 'tests' are not painful - they take a medical history and measure your flexibility.

lots of info about EDS here:

www.ednf.org

Michelle said...

Wow. That is very scary. Let me know when you go to the doctor. I'm curious as to how long it will take to get the test results back. And if she does indeed have this, what type? I'm sorry you're all having to go through this. I'll be thinking of and praying for you.

Michelle said...

This breaks my heart. Do you know what type Kara is?

Clay said...

I hope the news is good for you and your family.

Anonymous said...

I have the disese I am fourty now and I have had 11 surgerys ,I STAY IN GOOD SHAPE i WORK IN PHYSICAL THERAPY you need to keep the weight down and lift light weights thats what they tell me ,my ortho,doc I dont know if all the surgerys were because of this I know it is progressing, I had abiopsy at 36 I need to find a specialist it also affects my heart and circulation.