Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Cindy - will you tell Claire and Dr. Nazli about and I and that we want to be in the study too.... you can give them my home phone number. Thanks! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Cindy - will you tell Claire and Dr. Nazli about and I and that we want to be in the study too.... you can give them my home phone number. Thanks! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Cindy~~ I could not afford to go to land but am certainly up for a phone call. I have III and was diagnosed by my Rheumatologist 2 years ago after about 20 orthopedic/ mostly reconstructive surgeries and countless injuries all my life. You can get me off list and I will send my phone number. NIH/All members of CEDA hEY ALL, I'm hVING TROUBLE with this PC, it's nothing like mine,Anyway, DR F. and Dr Naz asked me to put this up to our list. Apparently they didn't know this study was not on the NIH list for all to find. They guess that is because it is at the Bayview Hospital instead, something like that. Anyway, they asked me to put this on the list for all. They want people. All types EDS even if they don't have a definate DX from a Genetics DR. They will interview you on the phone if you don't have a DX. (Dang PC) When I get home late tomorrow PM I will give all the info. They want you to caLL. i AM ALREADY AMAZED ABOUT THINGS WE HAVE FOUND OUT HERE ABOUT dYLAN. To much to even try to explain this late at night. We have more answers in 24 hours than we have had in over a year. My heAD IS SPINNING. ( dang PC!) I want my own bed and computer. Whaaa. No really, this is just great. My gut told me this is where we needed to be. Just bring your own pillows!!!! On Thursday look for the info if you can travel to land. Today, Jen in Ariz got in, Lana got in, S got in, and Dr F looked at Meagans (Canada) Papers and looked at me and said I'll see what I can do. But Meagan, the papers I had, didn't have your home info on it. Just Dr Grubbs. I'll have you contact Dr f when I get home. She is very interested in helping however she can. I'll write later on what we have found ABOUT dYLAN. all is so much more involved than what we knew. My head is spinning. Seems things are much worse than we thought. Tomorrows test should help put things together a BIT CLEARER. tHE dOCS ARE WAiTING FOR TESTS DONE NEAR HOME, from last year, TO ARRIVE HERE IN THE am TO DO COMPArisims to make a determination on what is happening to him. ( I do not like this key board, or it does not like me). I'll write more tomorrow. Night aLL. tHIS PLAce is amazing. Cindylouwho To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 My 2 boys and I would LOVE to be in on this study as well. Email me and I'll give you my phone number too!!!!! I would love to have some answers. HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Grace, The info is below, give them a call or email or both. If you want to talk on the phone, just email me at home and we can exchange numbers. c-clark05@... Cindylouwho Nazli McDonnell M.D. Ph.D. Clinical Fellow NIA/NHGRI mcdonnellna@... ph (TRIAD): ph(Harbor-ASTRA): NIH/All members of CEDA My 2 boys and I would LOVE to be in on this study as well. Email me and I'll give you my phone number too!!!!! I would love to have some answers. HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Grace, The info is below, give them a call or email or both. If you want to talk on the phone, just email me at home and we can exchange numbers. c-clark05@... Cindylouwho Nazli McDonnell M.D. Ph.D. Clinical Fellow NIA/NHGRI mcdonnellna@... ph (TRIAD): ph(Harbor-ASTRA): NIH/All members of CEDA My 2 boys and I would LOVE to be in on this study as well. Email me and I'll give you my phone number too!!!!! I would love to have some answers. HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi Debbi, I don't know exactly how that would work to talk to them for help. I do know they accept phone calls from Drs looking for answers for their patients. If your Doc had specific questions for them as how to treat you, I know they will talk to him/her. I suppose it wouldn't hurt to email some questions and see what happens. Sorry I can't be more help. Cindylouwho RE: NIH/All members of CEDA Cindy~~ I could not afford to go to land but am certainly up for a phone call. I have III and was diagnosed by my Rheumatologist 2 years ago after about 20 orthopedic/ mostly reconstructive surgeries and countless injuries all my life. You can get me off list and I will send my phone number. Quote Link to comment Share on other sites More sharing options...
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