What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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I recently found out that I have type VIII Ehlers-Danlos Syndrome. I also found out my 5 year old daughter has it as well or at least is showing symptoms of it. I have chronic pain that I am on a regular anti-inflamatory for and have lost all my teeth. My daughter has also lost many of her teeth and her perm are coming in bad. Along with this Syndrome I also have an auto immune disease called Grave's disease. So I am having a very rough time of it. Anyone have any advice?
Susan Posted on 10/31/09, 02:10 am |
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I know it is rough to get this kind of diagnosis and not know what to do about it. What I found to work best is to call around and ask each doctor's office if they are familiar with EDS before even making an appointment. If they haven't heard of it, keep looking until you find someone who has. It makes it a lot easier for them to brush up on tratment options than learning from a cramming-type research session. And ALL of the doctors and specialists I've seen highly recomend swimming. It is low impact and can strengthen the muscles around the ligaments. I think your daughter may benefit from this as well. Good luck and best wishes to both of you. 
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