Tag Archive: Ehlers-Danlos syndromes

My awareness mission

My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful for the trajectory my life has taken because of this disease. When I was a child I was, like most young boys, a hyperactive, rambunctious […]
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The Ehlers-Danlos Society Center opens at Indiana University Health

INDIANAPOLIS, USA — The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education, and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions. A Center for Change The Ehlers-Danlos Society has donated $500,000 […]
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Dear Warriors…..

Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began […]
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Response to British Society for Rheumatology

Response to British Society for Rheumatology “Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition” June 2019 In June 2019 the British Society for Rheumatology published an update of its 2013 document entitled “Guidance for Management of Symptomatic Hypermobility in […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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Our discovery of vEDS

Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17 times within the first 3 months of her life. One morning, 3am Effie woke up screaming, she had a seizure and turned stiff: we called […]
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Jameela Jamil Presented With The Ehlers-Danlos Society Patient Advocate Award

The Ehlers-Danlos Society was proud to present Jameela Jamil, British actor and activist, with the Patient Advocate of The Year award tonight, at its Global Learning Conference in Nashville.  Accepting the award via video link, Jameela thanked The Ehlers-Danlos Society for recognizing her with the award, and for welcoming her into their community: “I am […]
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The Ehlers-Danlos Society Launches its 2019 Global Learning Conference in Nashville, Tennessee

NASHVILLE, TENNESSEE , July 31, 2019 – The Ehlers-Danlos Society presents its Global Learning Conference in Nashville, July 30th-August 2nd. The 2019 EDS Global Learning Conference features both local and international experts and brings together the world’s largest gathering of people with Ehlers-Danlos syndromes and hypermobility spectrum disorders, patients, families, caregivers, and health professionals for […]
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