Immune Dysregulation Program Patient Stories

There’s no other pediatric hospital that combines the expertise of so many subspecialists to aid in the evaluation and treatment of children with immune dysregulation disorders. These providers collaborate to care and support each patient.

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Patient story

X-linked Lymphoproliferative Disease 1: Rafi’s Story

Genetic sequencing revealed that Rafi had an extremely rare, often fatal disease — and the discovery was amazingly made before he had serious symptoms.

Patient story

Multicentric Castleman Disease, PRES and Immune Dysregulation: Joey's Story

Small, flu-like symptoms quickly worsened for 13-year-old Joey, causing his organs to fail and his family to desperately search for help with his rare disease.

Patient story

Immune Dysregulation: Andrea's Story

When Andrea, 10, began having vision problems, there's no way her family could have predicted the complex diagnostic journey they were about to embark upon.

Patient story

CD40LG Duplication-associated Autoimmune Disease: Elijah’s story

In unlocking the key to Elijah’s mystery illness, CHOP doctors identified a new autoimmune disease and developed a customized plan to treat his disorder.

Patient story

Hemophagocytic Lymphohistiocytosis: Luca’s Story

After receiving treatment for hemophagocytic lymphohistiocytosis (HLH) at Children’s Hospital of Philadelphia, Luca is on the road to recovery.

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Immune Dysregulation Program Patient Stories

X-linked Lymphoproliferative Disease 1: Rafi’s Story

Multicentric Castleman Disease, PRES and Immune Dysregulation: Joey's Story

Immune Dysregulation: Andrea's Story

CD40LG Duplication-associated Autoimmune Disease: Elijah’s story

Hemophagocytic Lymphohistiocytosis: Luca’s Story