Community
Father-Daughter Dance for Ehlers Danlos Syndrome
Five-year-old Amelia Gibson and her father will be holding a “Father & Daughter Dance” on January 17th to raise awareness and funds for Ehlers Danlos Syndrome. Amelia and her mother are raising EDS Awareness in Indiana hospitals by giving packages containing personal-care items to patients. Amelia and her mother have EDS. Watch the video about their EDS awareness project to help hospital […]
Woman with Ehlers-Danlos Syndrome (EDS) Has Painful Dislocations 10 Times a Day
When Jojo was diagnosed with EDS, she felt relieved! “Finally, I had an answer to why my body is the way it is.” Her EDS went undiagnosed for 24 years! This is not surprising, as our poll indicates more than 50% of EDS patients wait more than 20 years for a proper diagnosis.
5th Grader with Ehlers-Danlos Joins OSU Women’s Hockey Team: Watch VIDEO
Watch this fun video of 10-year-old Erin joining the Ohio State Hockey Team through a program called Team IMPACT. Since Ehlers-Danlos makes Erin more susceptible to injury, it’s unlikely she’ll be able to participate in sports with her peers. But, spending time with the Buckeyes gives Erin the experience of being on a team. Erin has gained the […]
“POTs and EDS” Webinar by Dr. Henry Burkholder – Recording Available
EDS Awareness invites you to watch this FREE webinar recording! Sponsored by: www.bodysupportstore.com Dr. Henry Burkholder presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a Pediatric Cardiologist and presenter at the 2014 EDNF Conference in Houston, TX. PRESENTER: Dr. Henry Burkholder, Pediatric Cardiologist TOPIC: Postural Orthostatic […]
4th Grade Ehlers Danlos Student Receives Statewide Award
Dominic McMinn was chosen for this year’s “Every Student Succeeding” award and scholarship in California. An Ehlers Danlos student in the Accelerated Reading Program, he’s not only excelled academically, but overcome great physical hurdles. He is also the the youngest award recipient. Congratulations on your accomplishments, Dominic! Submitted to the Appeal-Democrat. “Dominic was named this year’s Region […]
Elisha Doesn’t Regret Decision to Amputate for Ehlers Danlos Pain Relief: Watch VIDEO STORY
Watch this video! Elisha Morgan is recovering from a controversial foot amputation — with no regrets. Whether you agree with her decision or not, there is no doubt of the bravery she’s displayed in this situation — we salute her strong spirit!
Foot Amputation Offers Relief and Hope for Ehlers Danlos Syndrome Sufferer
After a controversial surgery, Elisha Morgan feels she made the right decision to amputate her foot. She is hopeful. Her surgeon and her family have been supportive. (Part 2 of 3)
Chronic Pain from Ehlers-Danlos Syndrome Leads to a Drastic Decision
Elisha Morgan’s 8-year struggle with severe foot pain lead to an Ehlers-Danlos diagnosis that changed her life. Her doctors exhausted all treatment options. Now, she considers making a very difficult decision … (Part 1 of 3)
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