Doctor Who Devised a Treatment for Her Rare, Painful Disease Started Clinic to Help Others
"I'm able to use what I've gone through to help other people," says Dr. Alissa Zingman of her battle with Ehlers-Danlos Syndrome
Published on March 24, 2022 01:39PM EDT. PEOPLE MAGAZINE
After being diagnosed with Ehlers-Danlos Syndrome in 2017, Dr. Alissa Zingman devised a successful treatment for herself — and eventually opened a clinic, where she has treated 500 patients.
"Most people don't have the opportunity — when they go through something difficult — to feel like there was a purpose for all of it," Zingman, 39, tells PEOPLE in this week's issue. "I'm able to use what I've gone through to help other people."
Ehlers-Danlos Syndrome is a rare, incurable connective tissue disorder related to abnormalities in the structure of collagen. For Zingman, who lives in Silver Spring, Maryland, the diagnosis confirmed what she had suspected since medical school and explained what was going on in her body.
She first noticed symptoms in her freshman year of college, when she was dancing with a professional ballet company. One morning in January 2001, she jumped out of her lofted bed and slipped on a pillow on the floor. "My ankle rolled and my kneecap went all the way around the side of my knee," she recalls.
She popped her kneecap into place, wrapped it with tape, and headed to dance class.
"It sounds crazy but it never occurred to me to miss ballet. I was young, and if something hurt, you just kept going," she says.
By May 2001, her kneecap was dislocating multiple times a day. "I would do a pirouette, and it would just pop out. And I would just put it back in," she says.
Her knee began swelling so much that she couldn't perform at her best. She transferred to Columbia University and majored in dance and pre-med. Three days a week, she went to Lincoln Center to work with the dance specialty Physical Therapists. She spent five hours a day at the gym.
Still, Zingman was always in pain and often injured. During her second year of medical school at the University of Maryland, she learned about EDS in a lecture.
"In all of medical school, we probably spent 10 minutes on Ehlers-Danlos syndrome," she says.
When the professor mentioned how flexible EDS patients are, and how they can do "party tricks" like putting your foot over your head, or bending backwards, it rang true for her. The disease also makes people injury prone. "I'd had a lot of injuries for no apparent reason," she says. She remembers thinking, "I think I have this."
A few years later, when she was an orthopedic surgery resident at the University of Rochester Medical Center, she worked 100-hour weeks doing strenuous tasks like pushing heavy X-ray machines. She herniated a disc when she was putting a patient's dislocated hip back into joint.
She also met and married Adam Kelly and had a baby. "My health just kept getting worse and worse," she says. Her thumb joints were constantly dislocating. On Mother's Day, she squatted down to get a blanket out of the bottom of her daughter's stroller and tore her knee cartilage.
"My health seemed to be spiraling out of control," she says. "I was in so much pain."
By the time her daughter was seven months old, Zingman's health was so bad, she considered making videos for her baby's first day of kindergarten and wedding day and other events she didn't think she'd live to see. "I really thought I was dying," she says.
Over the next two years, she was in and out of the emergency room with a host of ailments including what she thought were bad asthma attacks, and gastritis, intense hot flashes, vomiting, bloating, severe acid reflux and more.
Finally, in September 2017, she was officially diagnosed with EDS.
"The outlook seemed very grim," she remembers.
There is no cure for EDS, but Zingman decided she was going to find a way to treat herself. "I walked into the kitchen and said to my husband, "Not me. No. I'm going to figure this out." And that was when everything changed," she says.
To combat inflammation in her body, she switched to a gluten-free, low, FODMAP, low-histamine diet. "A lot of the things that give food a really nice flavor unfortunately are high in FODMAPs. But when you go on a diet and your pain decreases by 50 percent, you're pretty motivated to stay on that diet," she says.
She also started working with a chiropractor to develop a treatment method. "There was one chiropractor who was really willing to listen to me and do things exactly the way I wanted and really almost be my hands — as opposed to just doing what she had learned in school," Zingman says. "She really helped me. I started figuring out my ribs were out of place, my jaw, my neck, my mid back, my pelvis. The stuff with my pelvis was so transformative. When I finally was able to get my pelvis to start staying in a more proper alignment I started being able to walk more, having a lot less pain."
By the time Zingman had her follow-up appointment almost a year later she was about 75 percent better. In two years, she felt 85 percent improved.
"She was shocked," Zingman says of her doctor's response. "She said, "Who treated you? What did you do?" And I started describing to her, basically I was treating myself. I was doing all these little tiny exercises. I started describing to her what I was doing. She's like, 'This is genius. You need to start a clinic. You need to take care of these patients.' "
In July 2019, Zingman opened P.R.I.S.M. Spine and Joint in Silver Spring, Maryland.
Zingman used what she had learned to develop an EDS treatment program that combines diet and muscular and skeletal manipulations. At her clinic, she screens patients for everything from mast cell activation syndrome to craniocervical instability to determine the root cause of all their pain and tailor their treatments. "What I say to my patients is, 'We're going to think about it like there's a brick wall between where you are now, and where you want to go. I don't have a magic wand and I don't have TNT, but I can help you take that wall down one brick at a time,' " Zingman says.
Working on patients, she has injured herself many times. She uses Chinese cups and other adaptive tools to assist her in performing manual medicine to spare the small joints of her hands.
Her husband, once a financial services consultant for an accounting firm, now manages her practice.
"She has the ability to make a real difference in people's lives," says Kelly, 39. "Opening P.R.I.S.M. has been easily the thing that I'm proudest of professionally and one of the most proud things that I've ever done just personally as well, in that we've been able to impact so many people's lives in such a dramatic way. We've had patients go from being wheelchair bound to being able to get out of their wheelchair or move out of their parents' house and go back to work. And we've had people either prevent spinal fusions or find out that they do need the spinal fusions and then we're there for them to help them rehabilitate and get back on their feet and we've seen patients just have incredible changes in their lives that way too."
Zingman tells her patients the goal is to give them 50 percent improvement in 18 months. "If they get to that 50 percent improvement sooner, great, but I don't want to give anybody false hope," she says.
The clinic has a four-year wait list, but another doctor will be joining soon. In July 2020, Zingman started the Elhers-Danlos Syndrome Research Foundation.
"Alissa is quite remarkable in what she's been able to accomplish. I'm really in awe of her dedication to using the knowledge that she's gained, to improve her own health and that of her patients," says EDS expert, Clair Francomano, professor of medical and molecular genetics at Indiana University School of Medicine.