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Patient's Life Transformed by Sun Allergy Breakthrough
3 Oct
Summary
- Rare sun allergy called EPP causes extreme pain from sunlight exposure.
- A new drug, bitopertin, shows promise in clinical trials for EPP.
- Patients in trials report significant improvements and increased sun tolerance.
Emily Pearson, diagnosed at 17 with erythropoietic protoporphyria (EPP), experienced severe pain from sunlight, impacting daily life.
She learned about bitopertin, a drug targeting the molecule that causes reactions in EPP patients, during a 2025 camp for children with similar conditions.
Participating in a Phase 2 clinical trial starting in July 2025, Pearson began taking bitopertin daily, leading to remarkable improvements in sun tolerance.
As of October 2026, Pearson has completed her first marathon, a significant milestone made possible by the trial drug.
Bitopertin is currently in Phase 3 trials, with data expected in late 2026. The FDA has requested more data before considering approval.
