In Memoriam

Losing a friend or family member can be devastating. At The Ehlers-Danlos Society, we believe that our community is our strength and our love and support of each other will help us recover from these painful losses. It is important for all of us that we share and celebrate the life lived by recognizing and honoring the importance of that person’s life.

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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
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
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
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,
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
My dear Merel deceased in me…five months of pregnancy. Died of a severe type of EDS. I will never really recover from this terrible experience. (Willemine Gort)
Jaquie was diagnosed with EDS at the age of I believe 20. I learned about Jaquie through her YouTube channel chronically Jaquie. She actually only lived about an hour from
My mother, Kimberly Cappo, passed away at the young age of 36. I was 15, my brother was two, and my sister was just four days old.  From a young
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
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
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,
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
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
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
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
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
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
Jordan was a fighter and smiled every day even when in pain. She had the vascular form with some mobility issues. We lost her to a massive heart attack August
Pamela Diane (Ferley) Badik died on April 12, 2017 in Pasadena, CA surrounded by her family and the staff of Regency Park Astoria Assisted Living and Faith in Angels Hospice. Pam
Our son was diagnosed at the age of 3 after several accusations by doctors of hurting our son. He had minor issues up until around the age of 12 when
Cindy, you were only 36 when vascular Ehlers-Danlos took you away, way too soon, on January 15, 2017. We were not only sisters but also best friends and partners in
My sister, Jeanne Bierach, was one of the strongest people I have ever known. She came into this world chronically ill and suffered throughout her entire life. Still, she was
My mother was our rock, the center of our family. She was strong and determined to live to 100. A thoracic aortic dissection due to EDS took that hope from
Shannon lost her battle at age 30 to what was thought to be vascular type EDS in March 2017. She was diagnosed in 2005 after her second surgery for Chiari
My son Timmy died on April 3, 2010. He had an aortal rupture. He was 25 years old. We thought we only had the joint issues with this disease, but
I “met” Christina only online in one of the many Facebook EDS support groups I found after I became suddenly and severely disabled by it in 2012 myself at 45.
Kellie was just 26 years old and had only been married for three months when she unexpectedly passed away from complications of EDS. She had so many doctors let her
I met Sue five years ago on one of the bigger EDS bulletin boards. What stood out right away was how much heart she had. The desire to be there
My grandmother struggled with many cEDS related symptoms from debilitating arthritis causing deformity, severe bruising and hematomas, extreme skin involvement, loose/unstable joints, organ prolapse, and on and on. With four
Adrian lived with the challenges of EDS with enormous resilience and humor. May he rest in peace, free from suffering. —Ingela Thuné Brown
My dad went undiagnosed most of his life. It wasn’t until my son (his grandson) and me were diagnosed that was it traced through to my dad. He lived all
Our son Shane passed away suddenly on June 10, 2013 at the age of 12. He was diagnosed at the age of 4. He had constant bruising and stitches on
My dad passed away unexpectedly and suddenly at the age of 50. He had a great deal of organ and tissue fragility. He had poor healing wounds and a lot
Passed away on August 31, 2015 Doris Matin Stillman, age 79, passed away on 8/31/2015 following an extended, complicated illness. Doris is survived by her 5 children and several grandchildren,
Passed away on April 11, 2015 Deborah “Debi” Lee Simmons Hojdila left her earthly body to join loved ones who have gone before her on April 11, 2015 surrounded by
Passed away on January 17, 2015 Lindsay Anne (Toris) Contreras, 29, passed away peacefully on January 17, 2015 after courageously battling vascular Ehlers Danlos Syndrome for five years. She worked
Passed away on January 15, 2015 Suellen Beck, 59, of King Street, passed away at 2:58 p.m. Thursday, Jan. 15, 2015, at Emmanuel Center for Nursing & Rehabilitation, Danville. Suellen
Passed away on July 12, 2014 Willis Kehely McGregor, son of Stephen and the late Katherine McGregor, died at his apartment in the Shaw neighborhood of Washington, DC during the
Passed away on January 11, 2013 Amy passed away in her home from complications of Ehlers-Danlos syndrome. Her husband, Kelby Kidd Price, whom she married in 2003, and her parents,
Passed away on October 2, 2012 Denise Ann (Sarkiewicx) Hercules, 44, of New Franklin, Ohio, left this life on Tuesday morning, October 2, 2012. Denise was a loving, devoted mother
Passed away on August 29, 2012 After taking fifteen years to be diagnosed with Ehlers-Danlos syndrome, and eventually being unable to continue to practice as an RN, Sue became very
Passed away on June 10, 2011 Barbara Goldenhersh passed away the afternoon of June 10, 2011, after a valiant battle against inflammatory breast cancer. Barb was EDNF’s Communications Director, and
Passed away on January 17, 2011 Shari Gamson was born in Cleveland, Ohio on July 25, 1936 to Rose and Louis Sattler. She lost her battle with cancer and passed
Passed away on April 9, 2010 Tyson James Moore, of Perrysburg, a loving son, father, brother and uncle, passed away peacefully at the Cleveland Clinic on the morning of April
Passed away on March 12, 2010 Ruth Ann Cooper, 56, of 916 S. East Ave. passed away at 12:08 p.m. Friday, March 12, 2010, at St. John’s Hospital in Springfield.
Passed away on February 16, 2010 Michael D. Gaines beloved husband of Rebecca Gaines, loving son of Joan Gaines and the late Bill Gaines, dear brother of Dana (Karen) and
Passed away on January 12, 2010 Glenn David Ross died on January 12, 2010. Glenn grew up in Potomac, Maryland, attended the University of Maryland, and graduated from Ohio Wesleyan
Passed away on August 25, 2009 Holly Kristine Jones-DeCair, 41, of Maumee, Ohio, passed away unexpectedly Tuesday, August 25, 2009, in Christ Hospital in Cincinnati, Ohio. Beloved daughter to Raymond
Passed away on July 17, 2009 Crystal Reid Austin, a business reporter for The Bismarck Tribune and former Associated Press reporter, died of complications related to vascular EDS. She was
Passed away on February 11, 2009 She will be missed. Grace succumbed to vascular Ehlers-Danlos syndrome on February 11, 2009. Grace was especially loved by the members of EDNF who
Passed away on January 2, 2009 Matthew was born July 1st, 1986 in Oakland, California. He is survived by his loving sister, Megan Mahoney, and his cherished parents, Mike and
Passed away on December 31, 2008 Cherylann Kathryn Gonzales, 31, a life-long resident of Albuquerque passed away in Houston, TX on Wednesday, December 31, 2008. She is survived by her

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