Community
Single Mom Dealing with Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks. But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life. By: Margaret Burin (ABC […]
CN Tower Will Have Blue Lights to Commemorate Rare Disease Day
This Saturday (2/28) Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day with the lighting of the CN Tower in blue at sundown. EDS is considered to be a rare disease; but experts say it is more prevalent than once thought – because it’s rarely diagnosed! To learn more about prevalence, watch Dr. Neilson’s video here. By Lisa Rainford of Bloor […]
Rare Disease Month Artwork Includes Ehlers-Danlos
Rare Disease Month brings out the images of those who are struggling with the challenges of Ehlers-Danlos Syndrome and other debilitating disorders. “Beyond the Diagnosis” is an art exhibit that features a piece depicting an EDSer and her caregiver. By Jacyln Torres Contributing Writer “Beyond the Diagnosis,” hosted for Rare Disease Month, aims to humanize portrayed […]
Rare Disease Day is February 28, 2015
The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015! February 23-27 is Rare Disease Week on Capitol Hill. Please join the efforts to raise awareness for EDS!
Ohio State University Women’s Ice Hockey Team held an Ehlers Danlos Syndrome Awareness Night
“On February 13, The Ohio State University Women’s Ice Hockey Team held an Ehlers Danlos Syndrome Awareness Night to support their teammate Erin Selfe (10), her family and the EDS Community during Rare Disease Month. Erin became a member of the Ohio State Team through Team IMPACT, a […]
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 […]
