Ehlers-Danlos Research Foundation

Sean Kathleen Hamilton was diagnosed with Vascular Ehlers-Danlos Syndrome in 2009. Her lifelong fight as a warrior ended on February 8th, 2023 when she was guided by the hand of God to heaven. Sean was an advocate for Ehlers-Danlos survivors and lived spreading awareness of this genetic disease. In honor of Sean, we are raising money to benefit Ehlers-Danlos Research Foundation, and any donation will help make an impact.

Sean's story began in 2009. While playing basketball she noticed her feet were swollen and large purple bumps were forming on her joints. After countless doctor visits to different specialists, her dermatologist was having dinner with his wife - a geneticist, she knew immediately what disorder Sean had. A genetic test confirmed that Sean had a mutation in her collagen gene, which meant that she had no collagen in any of her blood vessels, making them very fragile. Later that year Sean had both her lungs collapse during high school art class. In 2011 Sean suffered a stroke and the doctors found multiple aneurysms in her brain. In 2015, her hepatic artery ruptured and she was rushed into emergency surgery. With her syndrome, her tissues were too fragile to suture back together. She was placed in an induced coma for 2 months for her body to heal. She survived all these incidents thanks to Dartmouth Hitchcock Medical Center in Hanover, New Hampshire. After this surgery, she was left with an abdominal hernia which was repaired in 2018 by Johns Hopkins Medical Center using an artificial mesh.

January 2023, Sean was admitted to Parkview Regional Medical Center with intestinal obstruction. The doctors found pulmonary blood clots during her CT. She was rushed into emergency surgery again. Her tissue was too fragile to close. She was left with an open abdominal incision and her intestines were still leaking causing her to become septic. Sean was transferred to Cleveland Clinic in Ohio in hope of a solution from the vascular specialist. She was in their care for two days when she suddenly lost her heartbeat and was resuscitated. She has rushed into emergency surgery again - the surgeon was able to repair multiple bleeding arteries and she became stable. The next day, Sean suffered another vasculature rupture, the stress on her body became too much and she succumbed to her condition. Through all the pain, Sean fought. She woke up every day wanting to be alive. Not everyone knew what Sean had been through because she was such a bright light in their lives. She touched so many people. She was the bravest sister, daughter, aunt, cousin and friend anyone knew.

During her time of life, Sean invested in researching possible medical solutions. She found a research study being done in France using Cellepripol. Sean was admitted into research using this medication that was having great results for Vascular EDS. Sean loved being a part of finding a cure. Please donate to the Ehlers-Danlos Research Foundation so others just like Sean, fighting for their lives every day can have a cure.

More information about Ehlers-Danlos Research Foundation: The Ehlers-Danlos Syndrome Research Foundation (EDSRF) improves the care of people with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD) and related disorders in two ways: 1) by advancing innovative research on treatment modalities, efficacy, and delivery and 2) educating healthcare providers across disciplines on the diagnosis and management of this patient population. Our Foundation’s primary focus is on EDS research and provider education.