Archive for the ‘Family’ Category
Posted on November 2, 2015
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 […]
Posted on October 2, 2015
This is an encouraging story about a task force being created in Connecticut to address the issues for those with rare diseases like EDS.
Posted on October 1, 2015
Canadians with EDS have not been receiving the treatment they need. Families who have traveled to the U.S. for EDS treatment are seeking reimbursement from the Ontario Health Insurance Plan. Watch the video press conference and interviews with the affected EDS families.
Posted on August 10, 2015
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 […]
Posted on August 8, 2015
You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card. Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS. Her Birthday is August 31st, so get your wishes in the mail! Address provided below. __ Watch Jazzy’s story in […]
Posted on July 31, 2015
By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome. His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening. Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]
Posted on July 4, 2015
9-year-old Shea has discovered that swimming reduces his EDS pain. Aquatic activity is one of the best exercises for those with Ehlers-Danlos Syndrome. Shea Sargent is only 9-years old, but he’s
Posted on July 1, 2015
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 […]
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