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A woman who struggles with a genetic condition which makes standing hard and can cause her to pass out has revealed her amazing carer – her Great Dane DOG. Dara Katharina says that her beloved pooch is the world’s most caring dog and helps to keep her alive, by enabling her to stand, walk and […] View page
LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed. For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise awareness and show others […] View page
Kathleen Gagnon can no longer eat except through a tube in her stomach, her joints often dislocate when she walks, and her weight has dropped from 150 to 96 pounds. The 19-year-old scholarship student from Saint John was in her first year of neuroscience, with her eye on becoming a doctor, when instead, she became […] View page
As the nation begins responding to the epidemic of overdoses and deaths caused by opioids, some people with chronic pain who have relied on these powerful painkillers for years are finding them harder to get. A survey conducted by the Boston Globe and Inspire, a health care social network of 200 online support groups with […] View page
KIND-HEARTED friend who helps people struggling in her community has been nominated for a Community Pride Award. Beverly Thompson has been nominated by friends Kellie Jackson, 26, and her daughter Cady Brigham, eight, in the Good Neighbour of the Year category. Ms Thompson helped out Kellie during a particularly tough period in her life and […] View page
Karen Haberberg, 43, a photographer from New York, has created a series of portraits of children with rare genetic conditions Her brother Rafi, who died when he was three, before she was born, had Tay-Sachs, which destroys nerve cells in the brain and spinal cord She is working on a book featuring 25 families which […] View page
WEST OLIVE, Mich. (WOOD) — A single West Michigan family has lost five people to the same disorder. It’s called Ehlers-Danlos Syndrome, and the Yasick family knows the damage it can do. “How about we start with Uncle Steve?” Clara Klap says to her younger brother, Stevie Yasick, as they place flowers at the graves […] View page
Mountain Ridge graduate Allysa Seely has never been the type of person to ask “why me,” and after being named to the 2016 Rio Paralympics team, she is showing others how to achieve their goals. Seely, who graduated from Mountain Ridge in 2007, was diagnosed in 2010 at age 20 with Chiari II malformation, basilar […] View page
PRAISE: Gill Greenwood with Anthony Hart, who has Ehlers-Danlos syndrome HE endured terrible trauma as a child every time he sat in the dentist’s chair. With an undiagnosed medical condition affecting anaesthesia, no-one believed Anthony Hart when he told them the pain-numbing injections didn’t work. Eventually diagnosed with Ehlers-Danlos syndrome, a rare condition affecting the […] View page
The 12-year old Wales High School pupil put in hours of work to come up with an invention designed to transform the life of his mum, Sarah Kilner, who has a disabling condition. In the first ever Imagination Awards, launched by the West End production of Charlie and the Chocolate Factory, Lewis created his design […] View page
