Category: In Memoriam

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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Lisa Arriaga

Lisa Arriaga

My sister Lisa passed from vascular EDS on June 9, 2001. She was 20. She had been diagnosed at 15 after her lung collapsed and a biopsy of the tissue was taken in the hospital. She lived the last five years knowing her life expectancy was short, that she would be lucky to live to
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Saskia Jansse

Saskia Jansse

Saskia was born with club feet and several other things that the doctors didn’t know. At the age of four she dislocated her hip; that’s how we found out she had EDS. Over the years she dislocated her shoulder, etc., many times. They told us not to worry because you can grow old like that.
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Amy Jean Wilson

Amy Jean Wilson

AmyJean had vascular EDS. She passed away September 19, 2020, due to multiple aneurysms bursting in her body. She was my girlfriend and best friend. She was a true EDS Warrior. The University of Michigan Hospital declared her the worst case of EDS they ever seen. Amy was a walking miracle and now she’s my
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Brigitte Fricke-Pertiller

Brigitte Fricke-Pertiller

Brigitte Fricke-Pertiller passed away in Barcelona (June 15, 2019) at the age of 45 due to complications of her vascular EDS. Disappointed and lost by the doctors until it was too late. I am so sad and frustrated. I hope that her death was not in vain and something will change. (Andreas Fricke)
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Haylee Faith Garay

Haylee Faith Garay

Haylee Faith Garay was 8 years old, two weeks shy of her 9th birthday, when she lost her long battle with Ehlers-Danlos syndrome. Haylee had five stomach surgeries and more. She spent the past 13 months in the hospital; each time she was ready to finally get sent home, she had a set-back and was
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Jillin Studley (in memoriam)

Jillian Studley

Jillian Elizabeth Studley passed away on Wednesday, March 18, 2020 at the age of 30 due to complications of her vascular EDS. Jill always smiled through her pain. Always. People would ask Jill how she was feeling and she would smile and say she was good and ask how they were feeling. She didn’t want
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Teresa Zakow

Teresa Leokadia Zakow, née Trojanowska, passed away peacefully on December 28, 2019, in New Haven, Connecticut, at the age of 75. She is survived by her son, Andrei Zakow, daughter, Diana Zakow Totolos, and three grandchildren, Ares Totolos, Atlas Totolos, and Artemis Totolos of Brooklyn, New York. Teresa’s bravery, progressive thinking, and compassion will not
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Jennifer Nye

Jennifer Nye

Jennifer suffered many undiagnosed years from EDS. Her pain and gastric issues kept her from enjoying many things she would have preferred to have been doing. But she gave generously where she could. She cheered others up with her calls and text messages.She inspired others to overcome their personal battles. She was a second mom
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