From Rock Star Surgeon to Debilitating Symptoms: The Heartbreaking Story of an Ehlers-Danlos Diagnosis

Getting a diagnosis after 20 years of complaining about symptoms and being told it was all in your brain may come as a relief to some. "You'd assume so," says Dr. Alissa Zingman. "But the majority of it was grief." Zingman was diagnosed with Ehlers-Danlos Syndrome (EDS), a hereditary disorder affecting the body's connective tissue. "The thing about connective tissue is that it's everywhere," says Zingman, an orthopedic surgery by training. "It can impact your eyes, your nervous system, your gastrointestinal system. It has an impact on the spine and joints."

Living with Ehlers-Danlos Syndrome: Impact on Career and Daily Life

There are rarer forms of the syndrome, such as vascular EDS, which causes artery and organ walls to rupture, but Zingman has the more common hypermobile EDS. She had been a semi-professional dancer as a kid and teenager, thanks in part to her exceptional flexibility, but by the time she was diagnosed in her 30s, having become a doctor and having a daughter, she had given up her orthopedic surgery training and could not walk some days. She had slipped discs in her back, one of which occurred while she was seated at her computer, and she was in and out of the hospital with gastrointestinal disorders, her stomach so bloated that she appeared heavily pregnant, and she frequently felt on the verge of fainting out. She was also experiencing incontinence at times. "I was so far gone by the time I was diagnosed," she adds. When we meet on Zoom, Zingman is speaking from Maryland, US, and she could not be more dissimilar. She appears to be lively and articulate, and she frequently laughs.

Understanding Ehlers-Danlos Syndrome: Symptoms and Diagnosis

She claims her diagnosis was not a comfort because there is no cure. The physician who diagnosed her informed her that with treatment, she could expect a 10%-15% improvement. "I was barely able to care for my daughter on my own, and I wasn't sure whether I was well enough to practice medicine at all - so thinking the best I could expect was a 10%-15% improvement was depressing..." She takes a breather. "I think it was the lowest I'd ever been."

Zingman had worked hard to become a doctor, but she still owed hundreds of thousands of dollars in student loans that she wasn't sure she could repay. She claims she got through the day, worked when she could, and played with her kid, but "after she was asleep, I didn't come out of my room." My husband thought he’d married this rock star surgeon, who had been going to the gym twice a day and performing dance performances, and now he had this person whose powers were so diminished - I just felt small.

“It was a terrible feeling, but I had a supportive spouse who was the primary breadwinner; I was not a single parent living in poverty, with no family support. It’s really hard, looking at other people going through this without the education, resources and support system that were all such huge advantages for me.”

Source-Medindia