Category: In Memoriam

Judith Giller-Leinwohl

Judith Giller-Leinwohl

Judith Giller-Leinwohl struggled with Ehlers-Danlos syndrome for many of her 30 years. Repeated shoulder dislocations and subluxations resulted in over two dozen surgeries and hundreds of hospital visits. The resulting chronic pain took a toll on her mental health, and she understandably suffered from anxiety and depression. Through it all, Judith chose to stay as
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Emma Warner

Emma Warner

Emma was a strong, vibrant, beautiful person whom everyone loved. Her journey started in late 2009 with stomach pains that ended up turning into a rupture of her colon. Doctors had no clue why for a year, until another rupture and another major surgery. They finally diagnosed her with vascular EDS through genetic testing. We
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Alivia Croll

Alivia Croll

We lost our beautiful daughter Alivia, to vEDS, on January 1, 2022. Her heart completely gave out. She was only 15. She lived her life exactly the way she wanted to. She learned to skip to her own beat, knowing any day could be her last. She fought every day, just to get through the
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Janet Grant

Janet Grant

Janet Grant passed away from complications from gastroparesis in August 2021 at age 72. Unfortunately, she was misdiagnosed with a bowel obstruction and by the time the doctors realized what was going on, it was too late. She had suffered from many health issues from a young age and had had over 30 surgeries, but
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Robert Penosky-Smith

Robert Penosky-Smith

Robert Charles Penosky-Smith passed away September 5, 2015, after living 37 years with Ehlers-Danlos. He always laughed and try to mask the pain. So many dislocations, so many fractures, so many sutures. Finally he’s at peace. (Catherine Smith)
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Nathan Elliott

Nathaniel Elliott

Our son, Nathan Elliott, passed away September 5, 2021, after a long eight-year battle with the unrelenting pain of Ehlers-Danlos and slipping rib syndromes. He was 27 years old. Nathan was magnanimous, funny, and had truly gifted, “magical” artistic and musical talents. His love of his family and friends was fierce and unwavering, patient and
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Brian Bullard

Brian Bullard

My son, Brian Bullard, passed away November 18, 2019, from an aneurysm related to Ehlers-Danlos. He was 43 years old. He was diagnosed at Duke Medical Center when he was only six years old, mostly because he could do amazing tricks because he was double-jointed. In the beginning, Brian liked showing people his tricks and
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Amy Lee Fisher

Amy Lee Fisher

A warrior of Ehlers-Danlos syndrome, she fought so hard against EDS and gastroparesis and other conditions that go with EDS. We are all very proud of Amy. She fought hard through her life to get better and stay alive. She was an inspiration to us all, spreading awareness of EDS and what it was like
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Claire Mesman

Claire Mesman

Claire passed away on Sunday, March 21, 2021, at Leiden University Medical Centre (LUMC). She was only 40 years old. Claire suffered from aEDS, an unfair battle that was impossible to win. We remember her for her bravery and incredible lust for life, despite the astounding number of setbacks she faced.
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Matthew Zapor

Matthew Zapor

Matthew (11/27/90–01/06/2020) had hypermobility, scoliosis, and a bad heart with high blood pressure from age 11 as well as sinus arrhythmias and atrial fibrillation. He denied it and didn’t believe I had it. His heart was three times the size of a normal man’s. My son’s intelligence was in brilliance. He served five years in
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