Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Joy, Apply for both of you together. The rooms have two beds. They said I could have been going though it at the same time. these two wonderful Docs will follow through. Cindylouwho Re: NIH/contact I am going to try and contact them about the study, but I am a little doubtful about hearing back. Maybe I am just too cynical. I've been that way a lot lately as I continue to develop weird things that are all EDS related. I first contacted them in 1997 or 98 and was put on " the list " . I received some information and have recontacted them about once or twice a year since then. In 2001 I got a phone call from a male dr who was working on the study - he talked to me for a really long time, was very informative and took down lots of information from me -- supposedly. And that's the last I ever heard. I've let them know I am happy to pay travel expenses and that my dad and brother are also affected and they are also willing to travel, etc. Maybe now there's someone working on it that will do something. But after 6 or 7 years of contacting them and hearing that they're interested, I am not too optimistic. I want to help -- especially since my brother is in far worse shape than I am and he's never been checked out for anything since he has no health insurance. I'd love for him to at least find out some things that might help him or others with EDS. Joy To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.