Food protein-induced enterocolitis syndrome from the parent perspective

To describe the obstacles that parents face when caring for a child with food protein-induced enterocolitis syndrome (FPIES) and discuss initiatives of key importance to the FPIES community.

Findings from a previous survey indicate that 80% of pediatricians have little or no knowledge of FPIES, suggesting that awareness is severely lacking among frontline providers. A preliminary study also indicates that the condition can have a profound effect on quality of life for patients and families.

FPIES is a rare but growing condition that poses significant personal and familial challenges for parents before and after diagnosis. Increased efforts from the medical community are needed to raise awareness among medical providers, establish improved criteria and guidelines for diagnosis and management, increase understanding through research, and offer parent information and support at every stage.