Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman

The Spoonie Struggle

Episode 37: Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman

In this episode, Dr. Alissa Zingman discusses management and treatment of Ehlers Danlos Syndrome. Dr. Zingman started to have symptoms of EDS in elementary school, with stomach aches and heel pain. She was very athletic and danced, but kept getting injured and having knee dislocations.

She decided to become an orthopedic surgeon when she was attending medical school. After her daughter was born, she started to have a lot of EDS complications, including POTS and MCAS, which led to a career transition.

During medical school, she had tried to find a diagnosis, but was dismissed. After being diagnosed by Dr. Francomano, she was urged to start a practice working with individuals with EDS. Her goals are to help individuals with EDS and to educate patients and the public.

To create a good EDS medical team, it comes down to education and awareness and training. Team members need to be aware EDS exists and the ways EDS patients may show up in their office. Presentations on EDS need to be made at conferences for all disciplines in medicine as well as medical students and trainees. She discussed how common individuals with EDS are misdiagnosed with ADHD or anxiety, when it could be POTS or CCI. Step one for this is to show that we have a problem of increased cost and getting inappropriate care. Next, we need buy-in from other medical professionals.

Her approach to patient care is divided into 4 stages: organize, stabilize, mobilize, and dynamize. In organize, there are three stages. First is aligning the joints. Breathing mechanics are critical. Part two is neurologic, with sympathetic and parasympathetic tone. Patients need to be seen by someone who can treat POTS, sometimes with medical treatment and sometimes with lifestyle changes. They can work on the diaphragm with breathing. Part 3 is minimizing inflammation with MCAS and gut dysbiosis. Bracing can be included.

Stage 3 with stabilize with isometrics, muscle activation techniques, neurologic retraining, movement initiation, maintaining a neutral spine, gait mechanics, and sit to stand mechanics. For dynamize (Step 4), you engage in physical therapy and other maintenance treatments.

EDSRF is looking at the impact of underinvestment of EDS and that it would be advantageous to diagnose people sooner for everyone involved. They want to get research papers in targeted audiences hands. They are also looking at effective EDS treatment methods, as well as outcomes.

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