Teens
Fragile teen wishes to study medicine, spread awareness of Ehlers-Danlos Syndrome
15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome. When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for a wheelchair-friendly car and home. She is thankful to return to school and hopes to study medicine after graduating. She is passionate about EDS Awareness. By SARAH […]
Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome
After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]
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 […]
EDS Awareness Educational Series – Recording Available
Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many EDSers are misdiagnosed with psychiatric conditions before their Ehlers-Danlos, Dysautonomia or associated physical conditions are identified. Dr. Barnum addresses what can happen in extreme […]
Tennis Coach Gives Hope to Teen with Ehlers Danlos Syndrome
Megan has a new motivation to stay active despite Ehlers Danlos Syndrome. Her high-school tennis coach has paved the way for her to participate in modified varsity competition! Her strength and dedication has inspired her coach and peers. Megan also participates in the EDS support group in Columbus, Ohio. By Steve Blackledge “Les Somogyi couldn’t help but feel for […]
Maddison Parker to Meet Australian Prime Minister to Discuss Ehlers Danlos Syndrome Research
Maddison Parker is looking forward to having five minutes with Australian Prime Minister Tony Abbott to talk about Ehlers-Danlos Syndrome. Her persistence seems to be paying off – she is awaiting a date and time to be confirmed for the meeting. “MADDISON Parker is one step closer to getting five minutes with Prime Minister Tony Abbott. […]
