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Ehlers-Danlos treatment in Delaware ?

Autoimmune Diseases | Last Active: Jun 2 4:52pm | Replies (5)
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Profile picture for Becky, Volunteer Mentor @becsbuddy

@viccap I have written 2 responses to you tonight regarding resources for Ehlers-Danlos Syndrome physician and both times the responses were totally erased ! I couldn’t believe it! Rather than stay up late tonight (it’s almost 10 pm here), I thought I’d get up early and rewrite the responses. If you would rather not wait, here are the names of some resources:
NORD—National Organization for Rare Diseases
GARD—Genetic and Rare Diseases Organization
Autoimmune Association
Ehlers Danlos Syndrome
I should have better information in the morning.
What age is the child/person you are caring for?

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Replies to "@viccap I have written 2 responses to you tonight regarding resources for Ehlers-Danlos Syndrome physician and..."
Becky, Volunteer Mentor | @becsbuddy | May 28 10:37pm

@viccap I found some of the necessary information again so cross your fingers that my iPad will not lose it!
NORD. https://rarediseases.org
GARD. https://rarediseases.info.nih.gov
Autoimmune Association autoimmune.org
Please look up these organizations. They say that files are kept on the appropriate doctors for each AD!

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viccap | @viccap | Jun 2 4:43pm

@becsbuddy ....Thanks so much , Becky ! I just saw your valuable input. My son is 32 and has not been able to function physically for the past 13 yrs. We finally got in to the Mayo Clinic in Jacksonville where it was confirmed that he did suller from Ehlers-Danlos. Through our own research we started when he was 21, we were pretty sure this is the affliction he had. He met 8 of the symptoms E-D patients have, However, NO DOCTOR in Delaware would diagnose it !! He had MRI's, CT scans, saw nuerologists, PCP'physicians, physical therapists..... only after multiple request to the Mayo Clinic, did they accept him for evaluation ( that was 5 yrs ago). Unfortunately, there are NO physicians that we have found in Delaware that specialize in E-D......My sincere thanks again for your suggestions and advice

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