The doctor who is transforming the treatment of her rare genetic condition

By Emine Saner
The Guardian

For 20 years, Alissa Zingman suffered painful symptoms that were dismissed by fellow doctors. Then she was warned there was little chance of improvement. Now her pioneering clinic offers hope to those with Ehlers Danlos Syndrome.

To finally get a diagnosis, 20 years after complaining of symptoms – and being told it was all in your head – might, to some, come as a relief. “You would think that,” says Dr Alissa Zingman. “But most of it was grief.” Zingman was diagnosed with Ehlers Danlos Syndrome (EDS), a genetic condition that affects the connective tissue in the body. “The thing about connective tissue is that it’s everywhere,” says Zingman, who trained in orthopaedic surgery. “It can affect your eyes, your nervous system, your gastrointestinal system. It affects the spine and joints.”

There are rarer versions of the syndrome, such as vascular EDS, which make the walls of arteries and some organs at risk of rupture, but Zingman has the more common hypermobile EDS. As a child and teenager she had been a semi-professional dancer, thanks in part to her extreme flexibility, but, by the time she was diagnosed in her 30s, having become a doctor and had a daughter, she had given up her orthopaedic surgery training, and some days could hardly walk.

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