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.
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, […]
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 […]
The pressures from the school environment are difficult enough when a student is well. EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers. By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]
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 […]
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 […]
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 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,” […]
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In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”