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Mount Sinai South Nassau Is Designated as an Ehlers-Danlos Society Center of Excellence

One of only 18 medical institutions in the world to be honored

Posted: Dec. 21, 2023
Mount Sinai South Nassau Is Designated as an Ehlers-Danlos Society Center of Excellence

Mount Sinai South Nassau was one of just 18 medical institutions in the world to be named to the first cohort of the Ehlers-Danlos Society Centers and Networks of Excellence.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that can make joints loose and the skin thin and easily bruised. They weaken the connective tissues in the body, such as tendons and ligaments that connect and hold parts of the body together, and can weaken blood vessels and organs.

The Ehlers-Danlos Society honored Mount Sinai South Nassau’s Chiari EDS Program, which treats a variety of neurological malformations including but not limited to Chiari malformation type 1 (CMI), intracranial hypertension, intracranial hypotension, Eagle syndrome, and craniocervical instability, as well as spinal instability at additional levels. The vast majority of the program’s patients have EDS or other related connective tissue disorders, generally of the hypermobile subtype.

“Our Chiari EDS Program uses a multidisciplinary team approach, with experts in neurosurgery, neurology, plastic surgery, orthopedics, general surgery, ENT, GI medicine, and cardiology,” said Paolo Bolognese, MD, Surgical Director, Mount Sinai South Nassau’s Chiari EDS Program. “We provide the most advanced non-surgical and surgical treatment plans for both children and adults with all types of EDS and HSD pathologies.”

Under Dr. Bolognese’s leadership, Mount Sinai South Nassau’s Chiari program has grown into an internationally recognized service that regularly attracts patients from across the country. Many patients report having difficulty finding relief from their symptoms before being treated at Mount Sinai South Nassau.

CMI is a condition occurring at birth in which brain tissue extends into the spinal canal. It occurs when part of the skull is misshapen or smaller than is typical, pressing on the brain and forcing it downward. EDS can exacerbate Chiari by causing instability at the junction of the skull and neck. CMI has been reported as a condition that can occur with hypermobile EDS. The average age of onset tends to be younger in the CMI and EDS subgroup when compared to the general CMI population.

The Ehlers-Danlos Society conducted an extensive review of Mount Sinai South Nassau’s Chiari EDS Program to determine that it is fulfilling each principle of the society’s C.A.R.E. (Care, Access, Research, and Education) model. The cohort includes centers and networks from six countries: Australia, France, Germany, Italy, the United Kingdom, and the United States.

“This prestigious designation validates that the quality of our program is founded on a top-notch multidisciplinary team of physicians who provide expert patient-centered care and evidence-based treatments,” said Ilene S. Ruhoy, MD, PhD, Mount Sinai South Nassau Chiari EDS Program Medical Director.

Mount Sinai South Nassau’s Chiari EDS Program offers comprehensive diagnostic and state-of-the-art treatment options for patients with EDS and hypermobility spectrum disorders (HSD), which are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. The program’s specialists have extensive experience evaluating, diagnosing, and treating patients for a range of conditions, surgeries, and procedures related to EDS and HSD, including:

  • 1,500 surgeries for Chiari malformation
  • 1,000 craniocervical fusions (to correct instability in the upper neck levels of the spine)
  • 1,000 surgeries for tethered cord (when the spinal cord abnormally attaches to the spinal canal)

The Ehlers-Danlos Society states that the cohort “represents a wealth of expertise across many areas of care delivery and, together, they make a crucial step towards achieving the society’s mission of increasing the availability of clinical services, decreasing the diagnostic journey, and standardizing communication and care for people living with EDS, Chiari, and other hypermobility spectrum disorders.”

About Mount Sinai South Nassau
The Long Island flagship hospital of the Mount Sinai Health System, Mount Sinai South Nassau is designated a Magnet® hospital by the American Nurses Credentialing Center (ANCC) for outstanding nursing care. Mount Sinai South Nassau is one of the region’s largest hospitals, with 455 beds, more than 900 physicians and 3,500 employees. Located in Oceanside, New York, the hospital is an acute-care, not-for-profit teaching hospital that provides state-of-the-art care in cardiac, oncologic, orthopedic, bariatric, pain management, mental health, and emergency services and operates the only Trauma Center on the South Shore of Nassau County, along with Long Island’s only free-standing Emergency Department in Long Beach.

In addition to its extensive outpatient specialty centers, Mount Sinai South Nassau provides emergency and elective angioplasty, and offers Novalis Tx™ and Gamma Knife® radiosurgery technologies. Mount Sinai South Nassau operates the only Trauma Center on the South Shore of Nassau County verified by the American College of Surgeons as well as Long Island’s only free-standing, 9-1-1 receiving Emergency Department in Long Beach. Mount Sinai South Nassau also is a designated Stroke Center by the New York State Department of Health and Comprehensive Community Cancer Center by the American College of Surgeons; is an accredited center of the Metabolic and Bariatric Surgery Association and Quality Improvement Program; and an Infectious Diseases Society of America Antimicrobial Stewardship Center of Excellence. For more information, go to www.mountsinai.org/southnassau.