Archive for the ‘Family’ Category
Posted on May 13, 2015
Little Henry and his family are struggling with Classical Ehlers-Danlos Syndrome. It took a year to be diagnosed. Now that the cause of his symptoms has been identified, his parents can better care for him.
Posted on April 25, 2015
Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]
Posted on April 6, 2015
This UK mom is now more mobile! After receiving a grant for a scooter, she can now spend more quality time with her kids. By Tom Murphy of the Westmorland Gazette. AN EDEN mum-of-two who suffers from a life-changing syndrome is looking forward to regaining her independence after receiving a £500 grant to pay for a […]
Posted on March 24, 2015
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 […]
Posted on March 20, 2015
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 […]
Posted on February 7, 2015
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 […]
Posted on January 29, 2015
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,” […]
Posted on January 7, 2015
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 […]