Archive for the ‘Awareness’ Category

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Ehlers-Danlos – “An Accident Waiting To Happen”

Posted on June 18, 2015

Philip Howard was the 88th person in Britain to be diagnosed with Ehlers-Danlos syndrome (EDS). He has written a book about his fight to overcome adversity. Philip Howard’s new book “An Accident Waiting To Happen” tells of living with a rare condition that leaves him prone to falling over and breaking bones. Ben Blosse reports. […]

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Soccer Club Supports Teammate With Ehlers-Danlos Syndrome

Posted on June 15, 2015

Watch this TV news video about Madison whose soccer team helps raise awareness for Ehlers-Danlos Syndrome and funds for Cincinnati Children’s Hospital. The SouthStars Soccer Club Team Lightning hosted a bowl-a-thon at Poelking Lanes South in honor of Madison.

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Double-jointed? Often in Pain? It Could be Ehlers-Danlos Syndrome!

Posted on June 6, 2015

Ehlers-Danlos Syndrome (EDS) was once thought to be a rare disorder, but EDS experts say its prevalence is under-estimated and its diagnosis is often missed! Learn the signs.   By Abi Jackson _ If you suffer from these ailments, you could have EDS – a rare condition of the joints. Here’s what you need to know. If you don’t know […]

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EDS – Chiari Walk & Run in Milford, CT

Posted on May 21, 2015

EDS – Chiari Walks are being planned for EDS Awareness. Here is a well-organized walk that received newspaper coverage in Milford, CT. Jackie Stager is a smart, talented, and spirited young teenager with plenty of dreams, hopes, and aspirations just like any other 14-year-old.

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McCullough Students Sing to Help Girl with Ehlers-Danlos Syndrome

Posted on May 15, 2015

These very talented students are providing awareness for a child with Ehlers-Danlos Syndrome. McCullough Junior High School choir students raised thousands of dollars during their third annual pop concert benefiting a Woodlands-area family in need.

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Henry Has Classical Ehlers-Danlos Syndrome

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.

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New Program for Vascular Ehlers-Danlos Syndrome

Posted on May 10, 2015

Vascular Ehlers-Danlos Syndrome is the most devastating type of EDS. It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. The DEFY Foundation was started by two students at West Chester University.

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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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