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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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
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
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
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)
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
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
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
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.
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
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
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.
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
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)
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
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
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
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
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 me. Not only was Jaquie someone I looked up to in the community but she was also a friend, mentor, and an inspiration to me
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 age, nobody knew what my mother was experiencing. She would bruise easily and the slightest thing could tear open her skin. Years later they diagnosed
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
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,
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
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.
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.
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!
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
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
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
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 15, 2011.
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 was born to Seymour & Darlene Ferley in Albert Lea, MN on March 28, 1956.  She lived her first nineteen years on a farm near
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 he outstretched his right arm leading to an arterial bleed. He had to have his arm amputated and spent six weeks in hospital. A few
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 war against this horrible disease. I love and miss you so much more than I could ever begin to tell you. Rest in heaven my
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 an incredible mother, daughter, sister, and friend. She not only suffered from HEDS, but also from dysautonomia, MCAS, Crohn’s disease, and likely a mitochondrial disorder
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 her. She was mistakenly diagnosed with pneumonia; it was seven days before the doctors found out exactly what she had, and by then it was
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 malformation. The neurosurgeons at had started noticing a subset of patients with Chiari malformation also had an Ehlers-Danlos syndrome. They told me she was one.
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 we were wrong; he had an enlarged heart with no symptoms. The coroner thought he had high blood pressure, but he didn’t. I would beg
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. She eventually joined the Oregon EDS support group I ran in 2012 as she lived in California and had family in Oregon too. She would
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 down but still fought to educate about EDS and chronic pain disorders as well as be a great supporter to others living with the condition.
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 for her family, no matter what was going on with her, was the strongest I’ve seen in a long time. Even if it meant she
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 generations of diagnosed women in my family, she amazed me with her strength, positivity, and loving spirit. I never heard her complain even when she
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 his life doing what he could when he could for as long as he could. When I told him all the symptoms he was having
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 his delicate skin. Besides the bruises and scars, he had no signs of Ehlers-Danlos syndrome. His cause of death is rupture of his aorta due
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 of widespread pain. He suffered from a bowel rupture which miraculously survived in 2013. Sadly, his life was cut short on February 3, 2016 from
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, some of which have been diagnosed with a connective disorder and EDS. In lieu of flowers, the family has required that donations be made to
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 loved ones. She was the retired Office Manager of the Hall County Health Department. She leaves behind the only mans she truly loved, John “Bernie”
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 for many years as an Emergency Medical Technician (EMT), Howell Township Police EMS and Brick Township Volunteer EMS, until her condition worsened. She helped raise
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 was born May 1, 1955, in Sunbury, a daughter of Barbara Ellen (Yeager) Beck, of Northumberland and the late George Shelton Beck. She was a
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 early morning of July 12, his twenty-fifth birthday. The cause has yet to be determined, but he had struggled for the past two years with
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, Bob and Elaine Bordogna, and Bell, her service dog and constant companion, were by her side. She was preceded in death by her brother, Rob,
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 and wife while she courageously endured the struggles of living with Vascular EDS. She was born February 9, 1968 in a military hospital in El
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 active in the Ehlers-Danlos National Foundation. Her contribution to our organization over the past years has been immeasurable. She took on the volunteer position of
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 editor of Loose Connections, the Hinge, and other publications for the Foundation. Our heartfelt condolences go to her husband, Rich, their children and grandchildren, 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 away on January 17, 2011 in the San Fernando Valley (part of the City of Los Angeles, California). She is survived by her husband Sherman,
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 9th, 2010 after living courageously with Ehlers-Danlos syndrome for 36 years. The memory of Tyson will carry on in his son and best friend: Zachary;
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. Born April 26, 1953, in Springfield to Raymond T. and Mary Ann (Tomlin) Burget, she married Dale Rankin on July 31, 1971, in Manito. She
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 Jeff Gaines, also survived by nine nieces and nephews. February 16, 2010. Funeral service 1 PM Monday at Vielhauer-Clepper Funeral Home, 2961 Madison Rd at
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 University with a degree in business. He received his Masters in Education from Jones International University this past December. Glenn strove to help others through
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 Jones and Kay Deal, Holly was born December 27, 1967, in Toledo. Holly was employed as a dental assistant for Pero-Glinka Dentists and most recently
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 29. She was a 2006 graduate of the University of Nebraska at Omaha and editor of the student newspaper there, The Gateway. She also worked
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 knew her through her attendance at our National Educational conferences and her local group. She was dedicated to work for improvement in all types of
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 NancyMahoney, who were all at Matt’s side when his struggle with Vascular Ehlers-Danlos syndrome ended on January 2nd, 2009. Matthew is also survived by his
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 parents, Floyd and Angela Gonzales; partner, O.J. Hinojos; step-children, Jeremy and Adriannna Hinojos; brother, Floyd ” Guerro” Gonzales; niece, Lydia Gonzales; nephew, Brandyn Gonzales; grandmother,

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