Ehler-danos

[chiefmickeymouse]

Not sure if I'm spelling it correctly. Someone on the community board told me someone on here had it and had written about it. My son was recently diagnosed, and info would be much appreciated.

 

[mommasita]

HI there.. It is so darn tricky to pronounce or spell.. At least to me..

Sorry to hear about your son.. I myself am awaiting a positive diagnosis from a geneticist, as my DR is 99% sure..

If you try the Disabilities forum, there is a great thread on Ehlers–Danlos syndrome (EDS) ..

 

[chiefmickeymouse]

HI there.. It is so darn tricky to pronounce or spell.. At least to me.. Sorry to hear about your son.. I myself am awaiting a positive diagnosis from a geneticist, as my DR is 99% sure.. If you try the Disabilities forum, there is a great thread on Ehlers–Danlos syndrome (EDS) ..

Thanks! It was a better diagnosis than the one he had previously, Marfan syndrome. I took him to see dr. Dietz at Johns Hopkins during the Marfan family conference a couple if weeks ago. I'll check the disability forum.