Page 20 - Gates-AnnualReport-2019
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 HOPE REALIZED EHLERS-DANLOS SYNDROME CENTER OF EXCELLENCE ADVANCES RESEARCH, CARE
 Despite the daily challenges of EDS, Calla Winchell is more hopeful than ever about her future and that of others with EDS.
She’s a bright and motivated young woman with an infectious smile. She’s seemingly the picture of perfect health. But, at 25 years old, she wears support braces on her wrists and knees. And sports pain patches, too. Her condition is so painful, in fact, that she can’t sleep. She takes pills for that, she said.
Calla Winchell has Ehlers-Danlos Syndrome (EDS). It’s a rare group of genetic disorders that affects the elasticity of her connective tissues – the “glue” that holds the body together. There are 14 distinct types of EDS and the hypermobile form is the most common, impacting an estimated 1 in 5,000 people, with the majority of symptomatic patients being women. In hypermobile EDS, the symptoms and severity can vary greatly from person to person, with some patients only moderately impacted while others, like Calla, face pain and inconveniences on a daily basis.
The culprit of EDS is the body’s inability to process collagen protein correctly, which harms the connective tissue’s ability to provide support and structure to the body. It can cause
hypermobile joints, stretchy skin and fragile tissues. In other words, parts of the body that should be stable, are not.
The ligaments and tendons supporting the joints are loose, causing the muscles to pick up the slack. All day long, the muscles must contract just to keep the body together.
It’s a painful and debilitating disease that can affect many of the body’s systems at once, causing problems with digestion, breathing, movement and balance, and even mental health. People with EDS face the difficulty of finding an optimal plan for their treatment and care, often inhibited by the severity and complexity of the disorder. In addition, poor awareness of EDS in the medical community means that it regularly goes undiagnosed or is misdiagnosed.
Not unlike many others with EDS, Calla must navigate through a daunting array of physicians, specialists and healthcare providers across multiple agencies, each with differing perspectives and points of view.
20 Gates Center for Regenerative Medicine
   
























































































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