Archives

Cynthia Hillis

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 […]
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Jeanne Bierach

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 […]
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Mary LaCorte

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 […]
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Shannon Hoger-Heffner

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. […]
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Generalised joint hypermobility and shoulder joint hypermobility

Abstract Background: Generalised Joint Hypermobility (GJH) is a hereditary condition with an ability to exceed the joints beyond the normal range. The prevalence of GJH in the adult population and its impact on upper body musculoskeletal health and quality of life has mostly been studied in selected populations. The aims of this study were therefore, […]
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Hidden disabilities: Pain beneath the surface

Posted by the BBC, 5 July 2017: Many people live with hidden disabilities—conditions which don’t have physical signs but are painful, exhausting and isolating. Sympathy and understanding from others can often be in short supply. Natasha Lipman has Ehlers-Danlos syndrome. She is a blogger and podcaster. “If you’ve got an invisible disability, you’ve got to […]
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“Beyond Diagnosis: A Case Study on Healing Time”

Beyond Diagnosis: A Case Study on Healing Time is a recent paper just added to our “EDS Medical Articles” section (https://ehlers-danlos.com/eds-articles-research/). This study reflects about how, along one year, a Pediatric Care Team managed the case of a 16 years old girl (motor-limited since she was 15 months) who had been diagnosed a rare disease (Ehlers-Danlos […]
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Timothy Van Patten

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 […]
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Christina Rightmer

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 […]
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Kellie Doyle

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. […]
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