Yes (sorry about not logging in for the previous reply). There are some great resources online and one of them is the Canadian Ehlers Danlos Association, and the other is in the States, Ehlers-Danlos National Foundation. http://www.EDNF.org lets you read all the articles, but they had a "paid membership" option, which is on a sliding scale. Ceda has a yahoo group and uses the website seems to have disappeared. If you are on Yahoo Groups, you can search for it though.
The Mayo Clinic, the Cleveland Clinic, and there are links on the Ehlers-Danlos Wikipedia page that lead to some great doctors- http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome
Lupus is especially tough- so many doctors miss it or mistake it for MS, Fibromyalgia, or even Epstein-Barr Syndrome. I'm glad you found a doctor who was wise to the issues of Prednisone. I wish more doctors were as educated.
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Yes (sorry about not logging in for the previous reply). There are some great resources online and one of them is the Canadian Ehlers Danlos Association, and the other is in the States, Ehlers-Danlos National Foundation. http://www.EDNF.org lets you read all the articles, but they had a "paid membership" option, which is on a sliding scale. Ceda has a yahoo group and uses the website seems to have disappeared. If you are on Yahoo Groups, you can search for it though.
The Mayo Clinic, the Cleveland Clinic, and there are links on the Ehlers-Danlos Wikipedia page that lead to some great doctors- http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome
Lupus is especially tough- so many doctors miss it or mistake it for MS, Fibromyalgia, or even Epstein-Barr Syndrome. I'm glad you found a doctor who was wise to the issues of Prednisone. I wish more doctors were as educated.
June 3, 2009 - 9:00pmThis Comment
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