Caregivers
More Summer Camps for Children with Ehlers-Danlos Syndrome
The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall. Children with Ehler’s Danlos and their families will be eligible for this session. In addition we also will host a General Family Weekend in the spring and in the fall (4/22-24 and 10/21-23) that […]
The Reality of Ehlers-Danlos Syndrome
After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – WKTV.com UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]
Canada’s Treatment of Ehlers-Danlos Syndrome Calls for Change
Canadians with Ehlers-Danlos Syndrome are desperate for treatment and continue to advocate change in their health care system. MPP Michael Harris is calling for an all-party committee to form a comprehensive strategy on rare diseases. Patients like the Smith siblings are skeptical, but remain hopeful and thankful for community fundraising. By Darcy Cheek, Recorder and Times. You won’t find […]
Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome
This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]
Trevor will be Riding 100 miles to Raise Cash for Hypermobility Association
Trevor Sleeman will be riding his bicycle to raise awareness and funds for the Hypermobility Association. [Halstead Gazette] Trevor will take part in a 100-mile bike ride to raise money for people with a painful medical condition after his wife was diagnosed with it. Trevor Sleeman (pictured), 49, will take part in the Prudential 100 bike […]
Young Mom Diagnosed with “Rare” Genetic Disorder
Watch this TV news video about Enedina Stanger’s journey to Ehlers-Danlos diagnosis after the birth of her second child. (KUTV) Michael and Enedina Stanger’s love story started shortly after she graduated high school. The two eventually got married and they had 2 kids. After the birth of their second daughter, Enedina’s health started to deteriorate. […]
Support For Friends of Hypermobiles/ EDSers
A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _ If you meet these requirements you can join at www.facebook.com/groups/friends.of.hypermobiles. NOTE: no EDSers will be admitted to the group, it is for support people only so that […]
Henry Has Classical Ehlers-Danlos Syndrome
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.
