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Delaware Student Writes About Ehlers-Danlos Syndrome (Essay)

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I suffer almost daily with joint pain. At 6 feet tall, I am quite flexible and can bend my hands and fingers in unusual ways. Some say I am double-jointed, but it is just one of the classic symptoms of Ehlers-Danlos syndrome.  I play basketball, bike, run and hang out with my friends, who, for the most part, don’t even notice my condition. There are days when I walk a little slower or have difficulty writing in class, but I get through it.

I have to.

I have Ehlers-Danlos syndrome.

May is National Ehlers-Danlos Syndrome Awareness month. Ehlers-Danlos syndrome is an “inherited connective tissue disorder caused by a defect in the synthesis of collagen.” It is a debilitating and sometimes fatal genetic condition. It is far more common than estimated because it usually goes undetected in many people. There are six types of EDS. I was diagnosed with the hypermobility type–more common and less severe.

It affects 1 in 15,000 and some of the symptoms include loose, unstable joints that are prone to dislocation and hyperextension (double-jointed), easy bruising, chronic fatigue, flat feet and velvety smooth skin. I have been hospitalized for extreme musculoskeletal pain as a result of my EDS.

EDS is a lifelong condition with no cure and sometimes no relief from the daily pain. I am learning to cope with this life sentence, but at 17 years old, my life as an athletic and even normal teenager has changed. “My joints go out more than I do,” is an EDS phrase I can relate to. I expect to live a healthy, normal life with EDS, but maybe someday they will find a cure.

Please visit the EDS websites below to learn and/or donate to help raise awareness of EDS.

EDNF.org  |  ehlersdanlosnetwork.org

Peyton Beard is a junior at Wilmington Friends School.


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