The Washington PostDemocracy Dies in Darkness

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

Patients with Ehlers-Danlos Syndrome are often misdiagnosed or dismissed as hypochondriacs. That’s what happened to Dr. Alissa Zingman.

Dr. Alissa Zingman uses cupping therapy on Kassondra Ola to help alleviate pain from Ehlers-Danlos syndrome. (Katherine Frey/The Washington Post)

As her patient lay face down, Alissa Zingman gingerly felt the woman’s neck and spine for tension pulling her bones slightly out of place.

“It feels like I can’t breathe, like there’s an alarm going off in my head,” her patient said.

Zingman gently applied pressure to resolve the tension and coax the bones back into place. After a few minutes, the doctor’s thumbs and hands began to hurt. So she called over her assistant, an athletic trainer, to help.

“I have to be careful not to use too much force,” Zingman explained, “for my patients’ sake and my own.”.

For years, Zingman, 39, has struggled with the same rare affliction that plagues her patients – an incurable condition called Ehlers-Danlos Syndrome that causes weaker connective tissues in the body.

Zingman has sprained her thumbs in the past while working on patients. She’s partially dislocated her shoulder and ribs. She sometimes wears a dental appliance to protect her jaw.

Hours after a massage, a professor was wildly dizzy and deaf in one ear

The condition is so unusual, patients are often misdiagnosed or dismissed as hypochondriacs. Their joints slip in and out of place. Weak ligaments in their neck make it difficult to hold up their head. They often spend years wondering what’s wrong with them, ping-ponging between doctors unable to help them.

That’s what happened to Zingman. During medical school, doctors at her own hospital couldn’t tell what was wrong and dismissed her suffering. By the time she finally figured it out, she was in constant pain. She relied on a wheelchair to finish her third year of medical school and worried she’d have to quit medicine altogether.

“I felt like I was crazy, that I was at fault for what was happening to me. I thought everyone was just tougher than me,” she said. “But I’ve come to realize I’m one of the toughest people I know.”

A novelist’s labored speech signaled an unimaginable diagnosis

In the four years since her diagnosis, she has joined the small ranks of doctors in the country specializing in Ehlers-Danlos Syndrome and opened a clinic in Silver Spring devoted to the condition.

“Having a chronic illness has been a gift in some ways. The fact that I’m usually not in pain anymore and get to help people like me,” Zingman said. “I consider my story a happy one.”

‘Like I was invisible’

Ehlers-Danlos Syndrome is so understudied that experts cannot say for sure how many people suffer from it. Some studies estimate one out of every 5,000 people have the condition. Those with it often have super flexible joints, overly soft skin and a wide assortment of perplexing maladies – from heart palpitations to fatigue and nausea to unpredictable allergies.

The condition is caused by abnormalities in the body’s connective tissue and collagen. Often overlooked, such connective tissue goes beyond ligaments and joints. It holds nerves and organs in place. It knits the body together and plays a crucial role in the heart, veins and blood flow.

“That’s what makes EDS such a frustrating condition,” said Ilene Ruhoy, a neurologist and Medical Director for the Chiari EDS Center at Mount Sinai South Nassau Hospital. “The medical system is often focused on one organ or system. You have heart problems, you see a cardiologist. You have brain problems, you see a neurologist. But EDS manifests in so many ways. It doesn’t fit neatly into any one box.”

As a result, researchers say, the syndrome is under-researched, underfunded and often misdiagnosed.

Zingman grew up thinking her flexibility was a superpower. She danced professionally and was touring Paris by age 15. But then, she began suffering multiple injuries in her leg.

In high school, she started noticing inexplicable gastrointestinal problems and allergies. In medical school, after hearing of the syndrome in a lecture, she begged her doctors to evaluate her for the condition. They dismissed her as a hypochondriac, she said, remarking that every med student at some point thinks they have a rare medical disease they learned about.

One reason some experts believe EDS is so often misdiagnosed is that it disproportionately affects women who otherwise can appear healthy.

And odd symptoms aside, Zingman seemed to be in good health. She was a pilates instructor and choreographed dance. Between shifts at the hospital, she went to the gym twice a day. She got married and had a daughter.

But by the fourth year of her orthopedic surgery residency, her health was spiraling out of control. Her thumbs hurt so much she could barely hold her instruments. She struggled to push around X-ray machinery and could barely walk from the parking lot to the front door of the hospital.

She constantly felt like she was choking, even when she wasn’t eating. Her pelvic joint slid in and out of place all the time.

“I remember feeling like I was dying and like I was invisible,” Zingman said, on a recent day between appointments at her clinic. “It’s painful to think back to all the times when I reached out for help and was swatted down.”

It wasn’t until Zingman began having trouble speaking that she found doctors who took her symptoms seriously. A throat specialist said she was throwing up so much that she’d damaged her vocal cords and sent her to a gastroenterologist. The gastroenterologist told her something was seriously wrong, even though he couldn’t figure out what it was.

Zingman went online and began asking others for help. A woman she went to medical school with urged her to see one of the country’s top experts in EDS, who was at Greater Baltimore Medical Center at the time.

A few months later, Zingman finally received the diagnosis that had eluded her throughout her life.

“It was a relief but also extremely depressing,” Zingman said. While the symptoms of EDS can be treated, the condition itself is considered incurable.

Eventually, sitting in her Baltimore apartment, surrounded by anatomy books leftover from med school, she decided she would develop her own care plan and methods to get better.

“If I felt pain somewhere, I would trace the muscle tension and bones there and figure out how to move them and reduce it,” she said. “I started noticing and cataloguing the symptoms and solutions in my head. I got really good at putting my bones back into place and fixing problems as they occurred.”

She went from only being able to walk two blocks to walking for miles again. She overhauled her diet and routines and trained her body to maintain good posture and move in ways that kept her joints in place.

A doctor treating her encouraged Zingman to open a practice to treat other EDS patients.

“This is such a little understood disease," said Ruhoy who served at first as Zingman’s neurologist and now works with Zingman as a consultant for her clinic. "When patients describe something to her, the fact that she’s lived through it and can draw on what’s helped in her own life is really valuable.”

‘The heartbreaking thing’

The clinic Zingman opened in 2019 consists of an office on the fourth floor of a nondescript building in downtown Silver Spring. But there’s such a dearth of EDS specialists that her waiting list for new patients is more than 18-months long.

Her husband Adam Kelly — who quit his job in financial services to help her launch the clinic — said when the clinic first opened, Zingman found it so hard to turn patients away that she crammed in so many extra appointments. It left her overworked and threatened the hard-won health she had regained.

Many find her through online EDS forums and Facebook groups.

When Darcie Adams, 30, searched for the Ehlers-Danlos Society’s website this fall, Zingman was one of the only doctors in the Baltimore-DC area. Adams -- a grocery stocker at Aldi and college student – had already been seeing a rheumatologist and physical therapist for a year because of painful partial dislocations in her hips and feet.

“I went from stocking groceries all day to being unable to walk up a flight of stairs,” said Adams, who lives in Havre de Grace.

It took eight months to get an appointment with Zingman, but her health has been improving steadily ever since. “It’s been three weeks since I’ve had anything dislocate, which is a big milestone for me,” Adams said.

The main drawback to Zingman’s treatment, patients and Zingman note, is that it’s considered out of network for insurance, which forces patients to pay for some of it out of pocket.

“I decided when we opened that I could practice medicine the way I know it should be and get the best possible result. Or I could have it be based on high volume and insurance and not do what’s needed,” Zingman said. Her first appointments with patients often run two hours long. She hired athletic trainers, physical therapists and an osteopathic doctor who often work weekly with patients to realign joints and train their bodies to stay in place.

“The heartbreaking thing,” she said, “is that puts a lot of this treatment out of reach for people who can’t afford it. It’s something I have a tremendous amount of guilt about.”

Last year, Zingman launched the Ehlers-Danlos Syndrome Research Foundation to try to address that need. Working with other specialists, she hopes to train more doctors in EDS treatment and to publish enough research that such treatments might be covered by insurance in the future.

“There are so many people with EDS who need help. It’s soul-crushing sometimes to get these phone calls and emails,” she said. “Because I know it could easily be me on that phone call.”

Read more:

Covid killed her husband. Now it’s taking the only home her kids have ever known.

The vaccine tore her family apart. Could a death bring them back together?

Her disabled brother’s death from covid paralyzed her with guilt. Could she recover?