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EHLERS-DANLOS SYNDROME: ‘You just have to keep going’

Published in The Berkshire Eagle, 5/22/2017 In 1981, Alexandra Lloyd was a 25-year-old opera singer. “One day, it was just ‘ah-ah’” she said, motioning to her throat. And that was only the beginning. In 1995, her hands stopped functioning properly. At the time, she was a massage therapist. In 1996, she was listening to music […]
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“Let’s talk about EDS”, a short documentary by Aneela Shakoor

Student Aneela Shakoor has produced and directed a documentary about the Ehlers-Danlos syndromes for her final project as a film student at the University of Salford. Aneela does not have an EDS and did not know anyone living with it but she was moved by the lack of awareness anywhere about this condition. We thank Aneela […]
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Ehlers-Danlos Oklahoma local group raises awareness at the State Capitol

Oklahoma local group EDSOK had a successful event spreading awareness about the Ehlers-Danlos syndromes and related disorders during May Awareness Month at the Oklahoma State Capitol. This is the fifth year EDSOK has lobbied at the Oklahoma State Capitol for Ehlers-Danlos awareness. The original resolution was written in 2013 for the Oklahoma House for Representatives by […]
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This Woman Is One of Just 10 People in the World with Her Genetic Condition

Published in Reader’s Digest Doctors knew Melissa Bruebach was destined for health problems even before she was born, but it would take 24 years before anyone could tell her what was wrong. When Bruebach’s mom was pregnant, doctors could tell something wasn’t quite right, but technology wouldn’t let them test for specific conditions. “My mom […]
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RARE Bears for Ehlers-Danlos Society’s Rare Kids

RARE Science, in collaboration with The Ehlers-Danlos Society, will be offering handmade RARE Bears to all children with Ehlers-Danlos syndrome and related conditions throughout the month of May. The volunteer RARE Bear Army creates one-of-a-kind teddy bears for one-of-a-kind children with rare diseases. This is a free program, thanks to the dedication of many volunteers […]
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May is Ehlers-Danlos Awareness Month

The Ehlers-Danlos Society kicks off Ehlers-Danlos Awareness Month on Monday, May 1. This month-long observance of awareness, education, outreach, and fundraising for the Ehlers-Danlos syndromes and related disorders first began in 2006. “More awareness is needed for these often misdiagnosed and misunderstood conditions,” said Lara Bloom, International Executive Director of The Ehlers-Danlos Society and an […]
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