As told to Aileen WeintraubGrowing up in New Orleans, everyone thought I was cool because I was double-jointed. I could flip my tongue around and slip my arm out of its socket. It was fun to show off, but there was a serious downside. I bruised easily, and even the smallest scrape took forever to heal. Often, I couldn’t stop bleeding.As I got older, my checklist of symptoms grew. I’d have pain in my joints and difficulty swallowing. I always felt guilty when I couldn’t keep up with friends or if I was too sick from respiratory issues to hang out. When I tried to get answers, my healthcare clinicians dismissed me. But when I was 46, everything changed. By then, my daughter Whitney was 22. She had a very serious illness so we took her to a specialist at a well-known hospital to get her the best care possible. The doctor took tests and asked her some questions. He diagnosed her with Ehlers-Danlos syndrome. Whitney and Linda, May 2026 Ehlers-Danlos syndrome is a genetic disorder that affects the body’s connective tissue. This is the tissue that provides flexibility to skin, joints, blood vessels and organs. People with Ehlers-Danlos syndrome have hypermobility and usually experience ch...
After Being Diagnosed With Ehlers-Danlos Syndrome at 46, I Quit My Job and Took a Leap of Faith to Open a Cooking School in Tuscany
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