Community
Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome
In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT. Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her! By Kathleen Schassler, The […]
10-year-old with Ehlers-Danlos syndrome Joins UWGB’s Softball Team
10-year-old Ellen joins the University of Wisconsin’s softball team as an honorary member. Now, this young EDSer can experience the camaraderie of team sports – without the physical risk. By Korey Mallien. “The chronic pain and fatigue that 10-year-old Ellen Tellstrom deals with every day subsided this week when she met her new college softball teammates. “It was amazing,” […]
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 […]
10 year old Toby with Ehlers-Danlos Syndrome Regains Independence
The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost. Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome […]
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 […]
