Clinical trial helps treat woman's "insufferable pain" from sunlight
Summary
Emily Pearson has a rare skin disorder called erythropoietic protoporphyria (EPP) that makes her very sensitive to sunlight, causing severe pain. She joined a clinical trial for a drug called bitopertin, which lowers a molecule that triggers these painful reactions, and after starting the treatment, she began to tolerate sunlight much better.Key Facts
- Emily Pearson developed painful reactions to sunlight at age 8.
- She was diagnosed with erythropoietic protoporphyria (EPP), a rare condition that causes sun sensitivity.
- People with EPP produce too much of a molecule called protoporphyrin IX, which causes pain when exposed to sunlight.
- Bitopertin is a pill that reduces protoporphyrin IX levels in the body.
- Pearson joined the second phase of a clinical trial for bitopertin in July 2025.
- The trial’s second phase tests if the drug works well and checks for side effects.
- After taking bitopertin, Pearson’s ability to tolerate sunlight improved significantly within weeks.
- Clinical trials have four phases before the FDA decides if a drug can be widely used.
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