Sarasota Teen Wants Support Group for Ehlers-Danlos syndrome

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SARASOTA, Fla. – A serious diagnosis of a rare disorder is challenging enough for the hardiest adult, but one young woman with Ehlers-Danlos syndrome (EDS) is stepping up to raise awareness, and be her own health advocate.

Ehlers-Danlos syndrome is a genetic mutation of the connective tissue that causes young Stephanie Deihl to lack collagen.

Of the six major types of EDS, Diehl has two; one is the hyper-mobility type that resulted in knee surgery and rehabilitation.

“The rarest type that I have is the vascular type,” said Diehl, who does her research. “And with the vascular type I’ve also read that that approximately 90 percent live to be 40.”

Diehls explained that her EDS symptoms include tachycardia, an abnormally fast resting heart rate, irritable bowel syndrome (IBS) and asthma.

Diehl’s mother, Tammy Hopper, says she is proud of her daughter, and her research.

She is an amazing young lady who has defeated odds with medical illness, and instead of feeling sorry for herself, wants to do more and more for the community.

That includes “Bacpacs for Christ” — ‘bacpacs’ being acronym for Be a Caring Person, and Continue Kind Services.

“I get backpacks donated (as well as) other things — canned food, combs, soap, toothbrushes, things like that. I fill the backpacks up with those items, and I keep them in my car, and whenever we go out and we see a homeless person on the street, we stop and give them one of the backpacks,” said Diehl.

Diehl wants to be a marine mammal veterinarian, but her biggest, immediate hope is for a support group for Ehlers-Danlos syndrome here in Sarasota.

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