National Champion Figure Skater John Coughlin is an Ehlers Danlos Syndrome Supporter

John’s mother struggled with pain and was finally diagnosed with Ehlers-Danlos Syndrome.

John CoughlinThe Ehlers-Danlos National Foundation (EDNF) is pleased to announce that U.S. pairs figure skater John Coughlin has become a public supporter of the organization. Coughlin lost his mother to Ehlers-Danlos Syndrome (EDS) in 2010, and he is committed to raising awareness and increasing support for people who suffer from this disorder.

John Coughlin is a pairs figure skater who earned the 2012 U.S. Figure Skating Championships gold medal and 2012 Four Continents Figure Skating Championships silver medal in his first season with partner Caydee Denney. With former partner Caitlin Yankowskas, he is the 2011 U.S. champion. After skating for more than 20 years, Coughlin is en route to making his first Olympic team.

“I remember the struggle my Mom had as she went through one misdiagnosis after another. When she was diagnosed with Ehlers-Danlos Syndrome, she came back from the doctor’s office relieved to finally have a clear idea of what she was fighting,” said Coughlin. “The Ehlers-Danlos National Foundation was a great resource and support network for my mom and our family. After the diagnosis, I remember her feeling a sense of community with people who also had EDS, and how that sense of belonging made her feel stronger in her fight. Bringing this syndrome to the forefront would allow people like my Mom to find that network of support and knowledge much earlier on and improve the lives of people with EDS. I look forward to working with them to increase awareness of this disorder.”

EDS is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue. Depending on the individual, the severity of EDS can vary from mild to life-threatening. People with EDS may experience significant pain, hyper-flexible or unstable joints, skin that tears or bruises easily, and problems with their digestive, excretory and cardiovascular systems.

EDNF is a public charity that relies on donations to work towards its mission. For more information, or to donate, Click here.

We need more public figures promoting awareness of  Ehlers Danlos Syndrome.

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