Children's Hospital of Philadelphia
About
We are a specialist clinic for connective tissue disorders including but not limited to EDS and Hypermobility Spectrum Disorders. All therapists in this clinic are trained specifically in CT disorders, examination, and treatment strategies. We consult with pediatric patients aged 3-19 with diagnosed or suspected connective tissue disorders and offer evidence based recommendations and joint protection strategies. We also instruct patients and families in age appropriate, individualized home exercise programs with an emphasis on self awareness and self management of this life long condition. Where appropriate we will offer individual treatment sessions or consult with local therapists to ensure our patients who live further away receive appropriate management.
EDS Healthcare in Pennsylvania
Penn State Health's EDS Program in Hershey is an EDS Society Center of Excellence. CHOP in Philadelphia operates both a Cardiovascular Connective Tissue Disorders Clinic and the Roberts Individualized Medical Genetics Center (Roberts IMGC). Penn Medicine in Philadelphia has additional EDS resources. The Pennsylvania Association of Genetic Counselors supports genetic testing access statewide.
Central and eastern Pennsylvania have strong resources, but western Pennsylvania (Pittsburgh area) and the rural northeast have limited dedicated EDS programs. Pittsburgh patients may find programs in Columbus, Ohio or at IU Health in Indianapolis more accessible than traveling to Hershey or Philadelphia.
Finding Primary Care / Internal Medicine for EDS
Look for a PCP willing to serve as your care coordinator across multiple specialists and who screens for EDS cardiovascular, GI, and neurological complications at regular intervals.