Category: In Memoriam

Terra Parrish

Terra Parrish

Terra was an extremely active member of EDSOK, the Oklahoma Ehlers-Danlos support community, which she joined in 2014. Her passion in life was to help others with EDS, using her medical expertise at a nurse practitioner to guide and support others. This helped her cope with loosing her career when she became what she liked
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Janice McIntosh

Janice Gail Gilchrist McIntosh, 65 of St Johns, Florida, passed peacefully from this world into the waiting arms of her Savior on Friday, September 14, 2018. She was surrounded by loved ones when she succumbed to complications related to her lifelong battle with Ehlers-Danlos syndrome. Janice was born on August 14, 1953 in Knoxville, Tennessee,
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Jon Bielert

I got to know Jon Bielert through the large Facebook family of those with EDS and VEDS. Jon was a kind, gentle, and happy man who adored his three children, NASCAR, fishing & hunting, harvesting his own maple syrup, tending to his vegetable garden, and the great outdoors. Most of all though, Jon was a
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Logan Hinton

Logan Hinton lost his battle to vascular EDS and Cystic Fibrosis on 9/12/2015, due to a massive pulmonary hemorrhage. He was a wonderful child who loved life and passed away at the age of 15.
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Clement Schop

My dear father, Clement Schop, died in 1982, at the age of 28. I never got to know him. He didn’t know he had vascular EDS. Now I live with vEDS. I am 40 now, and think of him every day. We still miss him.
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Holly Adams

My sister died giving birth to her third child at age 31 years old. We didn’t know there was EDS VASCULAR in our family. After her death we found out the cause by an autopsy and therefore found out who else had it. My dad, daughter, nephew, daughter and I!
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James Doss

James Doss of Mobile, Alabama was diagnosed with Vascular EDS in 2011 when his femoral artery ruptured. Multiple doctors put their heads together and placed artificial arteries and he survived this major surgery. He lived life to the fullest, making people laugh, became an EMT to help others, animal lover, loved music, he would go
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Danielle Marcel Gillis

She suffered for several years in so much pain, no doctors to listen and no help. She was diagnosed finally during her autopsy. After knowing what she had from her cousin being diagnosed with it, she begged the doctors but they ignored her, said she just wanted pain meds even when she wouldn’t ask for
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Phedon Anderson

Phedon was only 22 when she died April 9, 2018. She was active, vibrant, outgoing, spunky, and soft=hearted. She had a sparkle to her and enjoyed dressing up. She loved her cats and animals. She was naturally talented musically, loved singing and cantabile. She had started an online support group for Ehlers-Danlos syndrome and would
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