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Is Ehlers-Danlos Syndrome really so rare—or is it misdiagnosed?

Is Ehlers-Danlos Syndrome really so rare—or is it misdiagnosed?
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Alissa zingmanHenri alexandre danlosEduard ehlersEhlers danlos societyEhlers danlos syndrome research foundationCenters of excellenceEhlers danlos syndromeSilver spring

Steph Aston sought help for a rare genetic disorder She died after being accused of faking her illness

EHLERS-DANLOS SYNDROME: After being misdiagnosed and committed to a psychiatric ward, Steph became a tireless advocate for Ehlers-Danlos Syndrome patients before her death at the age of 33, Bevan Hurley writes

New zealandNational institutes of healthUnited statesUnited kingdomSilver springNew zealanderZealand heraldAlissa zingmanSteph astonJameela jamilKelly mcquinlanJo hillRuby hillEhlers danlos syndrome research foundationAuckland district health boardZealand health

Steph Aston sought help for a rare genetic disorder She died after being accused of faking her illness

EHLERS-DANLOS SYNDROME: After being misdiagnosed and committed to a psychiatric ward, Steph became a tireless advocate for Ehlers-Danlos Syndrome patients before her death at the age of 33, Bevan Hurley writes

New zealandNational institutes of healthUnited statesUnited kingdomSilver springNew zealanderAlissa zingmanJo hillJameela jamilSteph astonZealand heraldRuby hillKelly mcquinlanEhlers danlos syndrome research foundationAuckland district health boardZealand health

A doctor struggled with a rare, incurable syndrome Now she helps others overcome it

After years of pain and, finally, her own diagnosis of Ehlers-Danlos syndrome, Dr. Alissa Zingman started a clinic to help others with the same rare connective tissue disorder.

United statesFrance generalNew providenceSilver springKatherine freyAdam kellyAlissa zingmanIlene ruhoyCassie donahueDarcie adamsCenter at mount sinai south nassau hospitalWashington postEhlers danlos syndrome research foundationGreater baltimore medical centerEhlers danlos societyMount sinai south nassau

The doctor who was told her illness was all in her head – and is transforming the treatment of her rare genetic condition | Health

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

United statesSilver springUnited kingdomAlissa zingmanEhlers danlos syndrome