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5938418 tn?1377023589

Looking for Atlanta area doc for EDS, JHS, POTS

I have a teen daughter diagnosed by pediatric ortho and doctoral physical therapist to have JHS.  It's not the simple variety as she has reflux, hernia, constant joint dislocations, fracture, severe pain, multiple instances tendonitis in joints, back and hip issues, headaches, dizziness on standing or turning head and more.  She's in constant pain :-(.    I need to find a doc with a background in EDS or JHS and familiar with POTS who can perhaps help.  Right now she just uses OTC NSAIDs, ice, Rx antacid and exercises to strengthen ligaments.  Thanks for any info!   Oh, in researching for her I came to realization I have some form of it too - mitral valve prolapse and a lot of the above issues growing up though not as bad as hers.  So a doc who treats teens first, but someone familiar with how this manifests in adults as well would be terrific.
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620923 tn?1452915648

  Here is what I found....

EDNF's physician directory: http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=9999 9999

These are the "EDS experts" I know in the English-speaking world...I do not know if there are also experts in Asia, the Middle East, and other areas who publish in languages other than those in which I can read. If anyone knows, please feel free to share. You can Google any of them for contact information.
Dr. Francomono at GBMC in Baltimore
Dr. Levy at Johns Hopkins in Baltimore
Dr. Tinkle in Chicago
Dr. Lavalee in South Bend, IN
Dr. Byers in Seattle
Dr. Grahame in London
Dr. Bravo in Sau Paolo
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620923 tn?1452915648

  Hi and welcome to the EDS group.

The only EDS dr I am aware of on the east coast is in Baltimore, MD.....I am sure there are others but it is not easy to locate them,

I hope u don't mind my asking , but did they rule out Chiari Malformation too? It seems to be related to EDS and POTS......and I wondered when reading her symptoms....

Those with EDS do not absorb vitamins and minerals from natural sources (food) or suppliments....so keeping close tabs is important, magnesium and vit D, and B12 are very important  add to that the meds for GERD also deplete magnesium and other nutrients.....


I did post in an EDS forum looking for a list of Drs and I will share it with u when I get one.
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