• Sun, Nov 16 2008

The genetic disorder that kept her from dancing

ballet-shoes-dance (Continuing Genetics and Health Series on Living with genetic disorder:

Ehlers-Danlos Syndrome)

Beth Hopkins danced before she walked, and sang before she talked. Her mom said she was one of those little kids who just knew what she wanted. Beth was dancing until two years ago, when her condition worsened and her joints were dislocating everywhere.

Beth Hopkins has Ehlers-Danlos Syndrome (EDS), a group of rare and life-threatening genetic disorders that affect connective tissues. There are six major types in the syndrome, and all affect the joints and skin. Symptoms include easy bruising, loose joints, weakness of tissues and skin that stretches easily. Beth has experienced all these growing up.

Beth’s jaws would dislocate while sleeping, and it must be pushed back in again. Sometimes, her fingers or toes would slip out of joint. Once while traveling to Vancouver, her sternum dislocated. Beth’s knees would dislocate after warming up for ballet, a dance she has enjoyed since she was young. Two years ago, she had to give that up as the condition worsened. These days, Beth is in a wheelchair.

For more information about Ehlers-Danlos syndrome (EDS), visit the EDS support site.

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  • Mackenzie

    I have a similar story… I learned to walk on releve instead of flat on my feet, and I haven’t stopped dancing since. I was in 9.5 hours of dance per week up until almost a month ago. I am now unable to releve at all and it is a struggle to even walk. The doctors suspect that I have EDS, due to my joint flexiblity and other symptoms. The doctors in my area have been unable to help me and most of which didn’t believe me. How was Beth diagnosed?

    I am understanding how Beth must feel. Dance has been a life-changing passion of mine. It has been a huge emotional release for me! It is difficult going through this without that release. Is Beth able to dance at all?

    Any insight or advice you have for me would be greatly appreciated! This “deteriorating” process has hit me so fast that my head is still spinning!

    Thank you for your time.

    Mackenzie