Ehlers-Danlos Syndrome Patients Empowered at NYITCOM Symposium

Imagine having skin that bruises and stretches easily or having to worry that gently bumping into a table could dislocate your joints. Ehlers-Danlos Syndrome (EDS) patients face these realities every day.

On December 8, EDS patients gathered at NYIT Auditorium on Broadway for the NYIT College of Osteopathic Medicine (NYITCOM) Ehlers-Danlos Syndrome Patient Symposium to learn about the latest treatment options and how they can improve their quality of life. Patients across the country could also tune in from home via a live link.

EDS is named for the two physicians who described the condition at the turn of the 20th Century, Edvard Ehlers and Henri-Alexandre Danlos. A group of inherited disorders, EDS affects the connective tissues supporting the skin, bones, blood vessels, and other organs. While healthy patients have connective tissue made of sturdy collagen, which allows tissue to be stretched to its limit and then safely returned to its normal position, EDS patients have connective tissue with insufficient or faulty collagen, resulting in fragile tissue. The condition can be life threatening if blood vessels are affected.

At the symposium, healthcare professionals, including geneticist David Tegay, D.O., associate professor and chair of Clinical Specialties, and founding director of the EDS treatment program at NYIT’s Academic Health Care Centers (AHCC), discussed techniques and therapies to help manage symptoms. Treatments reviewed by the presenters ranged from osteopathic manipulative medicine (OMM) to physical and occupational therapy to the Alexander Technique (a practice that empowers patients to manage symptoms by being cognizant of their posture and everyday tendencies that influence joint stress). Other NYITCOM presenters included Jayme Mancini, D.O., assistant professor of OMM, as well as Michelle Farella-Accurso and Samana Khan, AHCC physical therapist and occupational therapist, respectively.

“EDS conditions are not as rare as once assumed and can be life-changing upon diagnosis,” said Tegay. “This symposium reminds patients that although life may take an unexpected turn, it doesn’t need to come to a halt. While EDS may significantly impact quality of life and functional capacity, there’s hope, and our program will do everything we can to provide treatment and support throughout their journey.” Tegay is currently mentoring medical students as they study the genetic basis of hypermobility in EDS patients

Patients also heard from several other experts, including Anne Maitland, M.D., assistant professor in the departments of Allergy and Clinical Immunology and Otolaryngology at Icahn School of Medicine at Mount Sinai, who spoke about autoimmune disorders linked to EDS, and Lara Bloom, executive director of the Ehlers-Danlos Society, who discussed resources available through the organization.

“The tremendous interest generated by this symposium reminds us that NYITCOM provides a much-needed support system for individuals with EDS,” said Wolfgang Gilliar, D.O., dean of NYITCOM. “While EDS conditions are often misunderstood and the complexity of medical care unappreciated, through medical education, we are committed to preparing physicians who will treat these patients with the compassionate and competent care they deserve.”

For more information about how NYITCOM provides comprehensive treatment options for EDS patients and research opportunities for its medical students, visit nyit.edu/medicine.