Home / Health / Sunlight agony ends: Rare disease breakthrough
Sunlight agony ends: Rare disease breakthrough
3 Mar
Summary
- Rare EPP disorder causes excruciating pain from sunlight exposure.
- A new drug in clinical trials dramatically reduces light sensitivity.
- Kris Kinar experienced 127 minutes of sun exposure after treatment.
Kris Kinar, 53, has lived with Erythropoietic protoporphyria (EPP), a rare inherited disorder, since childhood. EPP causes immediate and severe pain upon exposure to sunlight, forcing Kinar to spend most of his life indoors, working night shifts and limiting his social activities. His diagnosis, finally made in his mid-30s, offered a name for his condition but no cure, as avoiding sunlight was the only option.
Hope emerged when Kinar joined a clinical trial at Massachusetts General Brigham for a drug called Bitopertin. Dr. Amy Yeung, who also has EPP, led the trial. The drug has shown a significant reduction in protoporphyrin levels, drastically improving light sensitivity. Kinar experienced relief within days of starting the trial and was able to enjoy 127 minutes of direct sunlight on June 14, 2025, a milestone after decades of suffering.
The trial, currently in Phase 3, is expected to conclude this year. Findings will then be submitted to the FDA for potential approval. Kinar now shares his experience to raise awareness and offer hope to others with rare, invisible illnesses, looking forward to making up for lost time with his family.
