EHLERS-DANLOS SYNDROME: ‘You just have to keep going’

Published in The Berkshire Eagle, 5/22/2017

In 1981, Alexandra Lloyd was a 25-year-old opera singer.

“One day, it was just ‘ah-ah'” she said, motioning to her throat.

And that was only the beginning. In 1995, her hands stopped functioning properly. At the time, she was a massage therapist. In 1996, she was listening to music and her ears started ringing.

“At this point, I was starting to suspect — this is my whole body,” she said.

Some times were better than others. During the stronger periods, she worked various jobs, including driving a school bus and delivering meals for Meals on Wheels.

Lloyd is a single mother of a daughter born in 1991.

“There was always a Plan B,” she said. “Any time a part of my body would become injured, I would just do my best to stop using it.”

Lloyd described how she set arbitrary limits to how far her condition could go. But the disease she didn’t know she had — Ehlers-Danlos Syndrome — exceeded those limits.

In 2002, she stopped being able to sleep in bed.

“I’ve been sleeping in that recliner there for 15 years,” she said, gesturing to the living room of her small home in Lee.

She’s had to cover up her home’s windows to keep out the light that hurts her eyes.

“There’s one rule to this. Respect the pain,” she said. “[I thought] ‘Just please kill me. Just somebody put a bullet in my head.’ I felt buried alive. My house was just a prison.”

Lloyd went to the doctor expressing how badly she needed answers.

On March 17, after about 35 years of confusion and being disbelieved, Lloyd was diagnosed with EDS.

“Just knowing what it is has validated what I’ve known all along,” she said. “I went through a lot of pain and suffering. Being not believed … there may be others out there who may be wondering, ‘what’s wrong with me?'”

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