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any one have Ehlers Danlos Syndrome

Forum: Autoimmune Diseases and Disorders


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January 11th, 2012, 09:40 PM
Mega Super Mommy
Join Date: Oct 2010
Location: long island, ny
Posts: 1,247
i've had it my whole life, i was diagnosed in NY by dr.Uboa who worked in Winthrop hospital. my son has it. we are in a type of our own. just looking to see if there's anyone out there. it would be nice to talk to some one who can relate

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January 13th, 2012, 08:10 AM
EmG EmG is offline
Super Mommy
Join Date: Aug 2010
Location: Reno, NV
Posts: 767
My rheumy said he thinks I have it, but I don't know. Is there a test for it? If so, he didn't test. I also have lupus. What issues does it cause you? Do you have to take any meds?
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January 13th, 2012, 09:30 PM
Mega Super Mommy
Join Date: Oct 2010
Location: long island, ny
Posts: 1,247
there are 2 ways, a skin biopsy is done to diagnose ehlers danlos and clinical diagnosis as well with a genetic's doctor. no meds, b/c i don't want to become addicted to pain killers, i just deal with the joint pain, bed rest. i don't over do it. i have hypotonia weakness in joints, i have hypomobility i can bend my fingers back and my knees go back. i have myopia, can't see far, my one eye is bigger than the other, i have one leg shorter than the other and wore shoe inserts as a child. i had a hernia at 3 yrs old. wound healing is slower. some scarring after wounds heal. immune system is weak. when i get sick up to 2wks to get better. i have dislocations of wrists, fingers, arms, hips. legs as well. learning disabled. perceptual incoordination. minor regurgatation in heart. my brothers and sister's all have different levels of pain and issues etc. my dad is the male domniant who has eds. my sister's children and my son has eds. they've been diagnosed by peditracian. my son might have to do a skin biopsy b/c his ehlers danlos is mild. they took blood worek dna array for gene abnomalties and other tests. i was told to wait a month. so i'll let you know what goes on when i find out. hope all works out for you.

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