Sarah Lustgarten-Bellah lives with gastroparesis, dysautonomia, and Ehlers-Danlos syndrome. In 2007, at just ten years old, she was formally diagnosed, beginning a lifelong journey navigating complex chronic illness. Her experience has included countless hospitalizations, intensive medical care, and reliance on advanced therapies such as feeding tubes and central lines. While these conditions shape her daily life, they do not define who she is.
Sarah is deeply involved in efforts to support both clinical care and research within the gastrointestinal space. Her family established the Suzi and Scott Lustgarten GI Motility Center at the Children’s Hospital of Philadelphia, which focuses on specialized care for patients with motility disorders. In addition, her family supports research through the Norman and Irma Braman Endowed Chair for Research in GI Motility Disorders at CHOP. Sarah also co-leads G-PACT’s Patient Advisory Council
A writer by training, she shares her own experience living with chronic illness and speaks to the importance of resilience—acknowledging medical reality while continuing to build a full and meaningful life beyond diagnosis.
