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Forum Name: Rheumatology Topics

Question: Ehlers-Danlos Syndrome


 pinky76 - Tue Nov 29, 2005 3:22 pm

I have Ehlers-Danlos Syndrome, which was diagnosed when I was two years old at Childrens Memorial Hospital (Chicago). I have not been to a doctor in a long time because my insurance deductible is too high; and I am worried because I have been experiencing amenorrhea for four months. I have two questions: Is the amenorrhea related to the EDS? Are there any doctors in Chicago who charge patients less money to see them because they can become more familiar with Ehlers-Danlos Syndrome by examining cases :roll: ?
 Theresa Jones, RN - Wed Nov 30, 2005 10:47 am

User avatar Hi pinky76,
The Ehlers-Danlos National Foundation should be able to assist you in locating a physician in your area and provide you with possible financial assistance options. According to the research I have read, I have not encountered a link between absent menstrual cycles and this syndrome. That's certainly not to imply that it does not exist but I haven't encountered it in the literature I've researched.
Following is a link to the foundation:
Click here!
I hope this is somewhat helpful.
Sincerely,
Theresa Jones, RN

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