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.
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 […]
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 […]
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 […]
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!
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)
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)
Gemma Christie is a popular UK singer/actress with 4 disorders, including Ehlers Danlos Syndrome. She is returning to the stage with the goal of bringing public awareness to invisible illnesses, such as EDS. This live performance called “Gemma Climbs Her Mountain” is about hope and rising above the illness. The play focuses on Myalgic Encephalopathy (ME), a disorder that is similar to Chronic Fatigue Syndrome. […]