lizzyc1974
New User
Female
3 posts since January 7th, 2009
New User
Female
3 posts since January 7th, 2009
lizzyc1974's posts
I am no genetics expert, but in reading your post a few things jumped out at me that I remembered seeing in searching for my son's genetic problem. Have you looked into Marfan Syndrome?
The things that reminded me of it is the long, narrow face, bird like features, stretch marks on skin.
You can read more here: http://www.marfan.org/nmf/GetCont... more
My son has Chiari and through our support groups for this problem we have come across many people who also have EDS. I belive there is quite a bit of research being done into the connection between the two. Check out The Chiari Institute. I know they do research and screening for EDS for patients with Chiari.
Chiari can cause blackout, drop attac... more
Hi,
My 24 month old son has been diagnosed with radial ulnar synostosis. We have found that it can run in families. After my son was diagnosed we found out my husband's grandmother (deceased) also had it. After doing some additional research we found that if you have been diagnosed with this you should be screened for heart and kidney problems as ... more
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