1036 - Bridging the Gap in Ehlers-Danlos Syndrome Care: Early Referral to Physiatry as a Standard Practice

Friday, February 20, 2026

5:00 PM - 6:30 PM AST

Presenting Author(s)

SA

Siam S. Ayon, n/a

Resident Physician
Burke Rehabilitation Hospital
Hollis, New York, United States

Co-Author(s)

RK

Rhea Kohli, BS

Medical Student
Burrell College of Osteopathic Medicine
Apple Valley, Minnesota, United States
AS

Andrew A. Salgado, MD

Resident Physician
Burke Rehabilitation Hospital
White Plains, New York, United States
AT

Andrew Tom, MD

Attending Physician
Burke Rehabilitation Hospital
White Plains, New York, United States

Submitter(s)

SA

Siam S. Ayon

Touro College of Osteopathic Medicine
Hollis, New York, United States

Case Diagnosis: Ehlers-Danlos Syndrome (EDS)

Case Description: A 39-year-old female with a past medical history of multiple CVA, osteoporosis, scoliosis, cervical dystonia, and mood disorder presented after her fifth fusion surgery. The patient had experienced hardware failure and infection 4 times prior, leading to these revisional surgeries. Despite the patient’s multiple spinal revision surgeries and multisystem symptoms, the patient had never been referred to acute inpatient rehabilitation or a physiatrist for evaluation and treatment, which the family attributed to sparse care in their rural area. The family was the main driver of the discussion with her providers about suspected Ehlers-Danlos Syndrome (EDS). The patient's condition was never fully investigated despite the patient’s systemic presentation, causing the patient’s physical health to continue to deteriorate. The physical exam was notable for hypermobile joints, skin bruises, cervical dystonia, and tenderness to palpation throughout her body.

Discussions:
EDS is a complex condition to diagnose and treat. Both cohort studies and meta-analysis have shown significant potential for improvement in EDS patients through early PT to prevent further complications. Systematic reviews have demonstrated that exercise and rehab can improve balance, proprioception, pain relief, muscular strengthening, and the psychological health of patients with EDS. Prospective cohort studies also showed that exercise and rehab improved the functional exercise capacity, fatigue, depression, hyperventilation, and overall quality of life of patients with EDS.

Conclusions:
While it is vital to obtain a PFT, TTE, and other lab tests, we strongly recommend the involvement of a Physiatry team as soon as a diagnosis of EDS is under consideration. Ultimately, a multidisciplinary team consisting of various specialists is crucial in allowing a patient with EDS to live a functional life. We believe that more studies are strongly needed to establish early physiatry intervention and reflect the importance of rehab and exercise programs for EDS patients in the long term.