Archive for the ‘Family’ Category

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Ontario’s Health Ministry hears pleas for Ehlers-Danlos Syndrome support, treatment

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.

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Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

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 […]

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Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

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 […]

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Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome

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 […]

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Trevor will be Riding 100 miles to Raise Cash for Hypermobility Association

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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The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome

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, […]

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