Invisible Illness: Chronically (ch)ILL
Dr. Alissa Zingman is a brave, resilient, and inspiring Orthopedic Surgeon-turned Musculoskeletal Preventive Medicine physician who has defied all odds and opened her own practice. She specializes in the very genetic condition with which she was born, one with which she was not diagnosed until she was a physician herself. This is her story.
“I’m Dr. Zingman, you can call me Alissa.”
This is how she introduces herself to her patients. Many female physicians get upset when patients and staff do not realize they are doctors, and call them “nurse” or by their first name while addressing male colleagues as “Doctor.” Not Alissa; her philosophy: “What’s so bad about being called your first name? If it makes the patient happy, then why not? I feel like it helps establish that we are in a partnership.”
This is the story of a brave, tenaciously resilient, brilliant and inspiring Orthopedic Surgeon-turned Musculoskeletal Preventive Medicine physician who has defied all odds and opened her own thriving practice. She specializes in the very genetic condition with which she was born, one with which she was not diagnosed until she was a physician herself.
Imagine being a doctor and KNOWING that for your entire life you have had a significant condition, but you have grown up with no one believing you, and were consistently told “it’s all in your head.” Throughout the years she (and many like her) have been labeled as being attention-seeking, anxious, a worrier, a hypochondriac, a malingerer, and maybe even “crazy.”
Hypermobile Ehlers-Danlos Syndrome (EDS) is one of the most common but likely most misunderstood and under-diagnosed of all of the Invisible Illnesses. Imagine something as simple as brushing your hair causing rib dislocations and a pulmonary contusion requiring a trip to the Emergency Room in an ambulance. This happened to Dr. Zingman, but she takes episodes like this in stride. It’s another “day in the life” of someone with EDS, and she doesn’t let the little (or big) bumps in the road slow her down. She shows her patients how to LIVE, and how to not let their condition define them or limit their dreams.
Patients come to her practice (https://prismspineandjoint.com/) from all over the country. Some patients and their families even move temporarily (or permanently) to Maryland so that they can improve the quality of their lives through her care. She spends 120-180 minutes with every patient at their first appointment, and then 2-3 hours at sessions thereafter (where patients also see other members of her practice, including physical therapists who she herself spends at least a month training in her methods before she considers having them see patients independently, and Muscle Activation Techniques Specialists whom she has taught to modify the technique to make it safe for patients with various skeletal instabilities (https://muscleactivation.com/). Muscle Activation Techniques have been a “life-saver” for her.
Alissa also diagnoses patients with Mast Cell Activation Syndrome, Dysautonomia, and other associated conditions that she states must be properly managed with diet, lifestyle and medication in order to achieve proper function of the nervous and musculoskeletal system. In addition to her Orthopaedic training, she uses osteopathic techniques and eastern medicine techniques. “I don’t argue with success,” she explains. “I know that I did not learn everything I need to know in medical school.”
Dr. Clair Francomano, MD of Indiana University’s Medical and Molecular Genetics Department is a leading EDS specialist/geneticist who diagnosed Dr. Zingman and became one of her mentors. The two still actively collaborate to discuss complicated patients and research endeavors. Alissa also works closely with Dr. Fraser Henderson, MD the Director of Neurosurgery at Doctors Hospital and Director of the Chiari Center of Excellence in Maryland, where he focuses on the understanding and treatment of deformity-induced injury to the brainstem and spinal cord in Chiari Malformation and EDS.
Alissa works so closely with Dr. Henderson and his partners that she is opening her new office adjacent to his practice. While this is an expensive project, she states that this coordination of care is “critical to the management” of complex cases.
The best interest of her patients is clearly Alissa’s top priority. She hopes to be laying the groundwork for a multidisciplinary treatment and research center that also will educate fellow physicians and allied health professionals. Dr. Zingman even started a nonprofit foundation during COVID pandemic downtime to help support this work (www.edsrf.org). Though this is a brand new venture for her, the foundation already has raised enough to have one full time employee dedicated to assisting EDS research and physician education. Alissa coordinates care like no other and advocates for her patients with a variety of physician colleagues with whom she is “extremely grateful and fortunate” to collaborate.
I spent almost two hours listening to Dr. Zingman’s story when we were finally able to connect. She reminded me of why I went into medicine in the first place, and highlighted the importance of LISTENING to and BELIEVING in our patients. Treating patients like her is why I personally became a doctor, and to a large extent, why I no longer see patients in a typical traditional office setting. I refuse to be chained by time limitations, click-centric Electronic Health Records designed to pad healthcare bills, questionable quality metrics, patient satisfaction surveys and all of the other trappings that organized medicine has become.
I couldn’t help but imagine myself as Alissa’s doctor as we spoke. “Medical mysteries” and those who have been misunderstood are my niche, my “specialty”...in my mind I was in the exam room with her, spending much more time than had been allotted because her story was so fascinating. I was channeling my inner “Greg House, M.D.,” trying to figure out her diagnoses as the medical sleuth I had been trained to be. What started as a series of knee and ankle surgeries in her teens, included a few episodes of syncope and chronic neck and shoulder pain and subluxations in medical school, progressed during her residency to daily vomiting and gastritis as well as dizziness and six herniated discs. She developed aphonia due to severe vocal cord dysfunction between her two residencies. After being misdiagnosed with a panic attack, she was referred to a vocal cord specialist who provided referrals that finally led to Dr. Francomano. Her journey included incorrect diagnoses ranging from asthma to attention deficit disorder to posterior tibial tendon tear to celiac disease.
Even though I was at home during our call because of quarantine, I half-expected during our interaction to hear a knock on my door from my nurse telling me “the strep test you ordered was negative” (“internal code” for “hurry along Dr. Smith...the waiting room is full and your patients in Rooms 1 and 3 are getting restless). It was hard to stop talking and asking her questions, though, because her story was so interesting, so captivating.
Dr. Zingman works full-time while fitting in 10-16 hours of physical therapies per week, at least one urgent care visit per year for dehydration, intermittent pain due to a dislocation, monthly appointments for prolotherapy or temporomandibular joint appliance fittings or gastrointestinal studies, and countless other challenges. She has had 5 orthopaedic surgeries, did one of her medical school rotations in a wheelchair, and has spent the last few years on a severely restrictive low FODMAP and low histamine elimination diet.
Dr. Zingman is actively involved in research collaborations looking at the natural history of EDS, healthcare dollars wasted in delayed diagnosis and ineffective treatments, the state of physician education, and the role of manual and exercise therapies in skeletal instabilities and dysautonomia. The foundation provides support to bolster the research efforts of leading EDS clinicians and is creating tools to aide physician education and care coordination.
The one time she became quiet during our interview was in discussing insurance companies, as she is deeply saddened that insurance companies will not cover the level of care she provides for her patients. I applaud her for not accepting insurance. It allows her to be the best possible doctor to her patients.
One of my favorite things I learned about Alissa: she tells her patients that their bodies are like expensive, high-end sports cars that can perform fancy maneuvers and require a specialized owners manual, when most mortal humans are born with boring, mostly maintenance-free, dependable sedans. She celebrates her patients and teaches them how to love their bodies, no matter how many times they feel betrayed by subluxations, fatigue, digestive issues and pain. She ensures they understand their condition is not their fault and that they can get better: they’ve just been following the wrong user manual. Then, she does her best to provide the correct manual and teach patients to become as independent as possible in addressing their joint subluxations and injuries.
Her life mission is to help EVERY patient with EDS. She is well on her way.