Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 , It's not posted on the NIH website, but it's active and quite a few people here have been involved already - perhaps someone can step forward and give us the title of the study? Regardless though, please do write Dr. Francomano and tell her about yourself, she's wonderful, kind and thorough, and she'll respond to you. Jill Jill -- would you locate the study protacols number for us - Or tell us the name of the study please ? I'm new to your group - and just searched the NIH listings for either " ehlers danlos " ( no results ) and " connective tissue " - where none of the results returned seemed related to EDS . My local rheumatologist is currently searching for a specialist to refer me too , and I have been assisted by Dr Heiss a chiari neurosurgon at NIH previously as someone already in an odd pickle with both chiari and multiple sclerosis confirmed prior to my additional eds diagnosis . I'd love to gain help on the EDS overlay from NIH - they were VERY helpful in my prior quandry ! thanks - I wish I could have found the study you mention on my own -- deep sighs - at least I tried ! in Paradise '' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 OK, I finally found it! Whew! Here is the webisite that describes it: http://clinicaltrials.gov/ct/show/NCT00001641?amp;order=1 Love Lana > , > > It's not posted on the NIH website, but it's active and quite a few people > here have been involved already - perhaps someone can step forward and give > us the title of the study? > > Regardless though, please do write Dr. Francomano and tell her about > yourself, she's wonderful, kind and thorough, and she'll respond to you. > > Jill > > > Jill -- would you locate the study protacols number for us - Or tell > us the name of the study please ? I'm new to your group - and > just searched the NIH listings for either " ehlers danlos " ( no > results ) and " connective tissue " - where none of the results > returned seemed related to EDS . > > My local rheumatologist is currently searching for a specialist to > refer me too , and I have been assisted by Dr Heiss a chiari > neurosurgon at NIH previously as someone already in an odd > pickle with both chiari and multiple sclerosis confirmed prior to > my additional eds diagnosis . I'd love to gain help on the EDS > overlay from NIH - they were VERY helpful in my prior quandry ! > > thanks - I wish I could have found the study you mention on my > own -- deep sighs - at least I tried ! > > in Paradise > '' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 NOPE, that's NOT it - I'll keep looking! > > , > > > > It's not posted on the NIH website, but it's active and quite a few > people > > here have been involved already - perhaps someone can step forward > and give > > us the title of the study? > > > > Regardless though, please do write Dr. Francomano and tell her about > > yourself, she's wonderful, kind and thorough, and she'll respond to > you. > > > > Jill > > > > > > Jill -- would you locate the study protacols number for us - Or tell > > us the name of the study please ? I'm new to your group - and > > just searched the NIH listings for either " ehlers danlos " ( no > > results ) and " connective tissue " - where none of the results > > returned seemed related to EDS . > > > > My local rheumatologist is currently searching for a specialist to > > refer me too , and I have been assisted by Dr Heiss a chiari > > neurosurgon at NIH previously as someone already in an odd > > pickle with both chiari and multiple sclerosis confirmed prior to > > my additional eds diagnosis . I'd love to gain help on the EDS > > overlay from NIH - they were VERY helpful in my prior quandry ! > > > > thanks - I wish I could have found the study you mention on my > > own -- deep sighs - at least I tried ! > > > > in Paradise > > '' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Anyone wanting the NIH info please contact me at c-clark05@... I'll send it to you. I need your email at home to send it. Cindylouwho PS Also let me know if you can not open a Microsoft word document. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Anyone wanting the NIH info please contact me at c-clark05@... I'll send it to you. I need your email at home to send it. Cindylouwho PS Also let me know if you can not open a Microsoft word document. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Cindy, please send it to me, as I've already sent an email to Clair, but want to show my husband. You can send it to me at home or at work, OK? Thanks Cindy! Love Lana > Anyone wanting the NIH info please contact me at > c-clark05@c... I'll send it to you. I need your email at home to send it. > Cindylouwho > PS Also let me know if you can not open a Microsoft word document. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Cindy, please send it to me, as I've already sent an email to Clair, but want to show my husband. You can send it to me at home or at work, OK? Thanks Cindy! Love Lana > Anyone wanting the NIH info please contact me at > c-clark05@c... I'll send it to you. I need your email at home to send it. > Cindylouwho > PS Also let me know if you can not open a Microsoft word document. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Can I read it too please? Thanks! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Can I read it too please? Thanks! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 From: buckysmom2000 Cindy, please send it to me, ,,,,, Love Lana ***************************** It's on it's way Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 From: buckysmom2000 Cindy, please send it to me, ,,,,, Love Lana ***************************** It's on it's way Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Thanks Cindy, you're the best! Love Lana > > From: buckysmom2000 > > > Cindy, please send it to me, ,,,,, > Love Lana > > ***************************** > It's on it's way Lana > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Thanks Cindy, you're the best! Love Lana > > From: buckysmom2000 > > > Cindy, please send it to me, ,,,,, > Love Lana > > ***************************** > It's on it's way Lana > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 From: Jill Can I read it too please? Thanks! Jill ******************************** It's on it's way Jill. Your welcome :~) 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 July 28, 2004 Report Share Posted July 28, 2004 From: Jill Can I read it too please? Thanks! Jill ******************************** It's on it's way Jill. Your welcome :~) 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 July 28, 2004 Report Share Posted July 28, 2004 From: Jill Can I read it too please? Thanks! Jill ******************************** It's on it's way Jill. Your welcome :~) Cindylouwho To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
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