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Help me understand ehlers danlos syndrome please

Sheila

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Teresa: Two of my children, as well as myself were diagnosed with EDS. My oldest child died 4 yrs ago today due to a left disected carotid artery from the disease. She had multiple surgeries to keep her joints in place. She had scoliosis and a Mitral Valve Prolapse along with a host of other problems, all related to EDS. My son has hypermobile joints and is not allowed to play sports. The barometric pressure changes effect us terribly. There is so much information on the net regarding EDS, it is probably your best source for now. CEDA, Canadian EDS group has literature that you can send away for. When she is of school age this information should go to school with her. Be proactive and very supportive of both your grandchild and her parents. Type 4 has a great deal of vascular involvement and can prove fatal. Read as much as you can once you find out what type she has. Check out EDS Today on the net also. The editor is a friend of mine and she is wonderful! There are support groups available and many many people you can get information from. Research and never stop asking questions! God Bless.

 


   
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