After days of talking about snow, the focus shifted to the sun on Boston 25 News Now at 3 p.m., where two local women shared what it’s like to live with a rare and debilitating sun allergy.
Ginger Gonsalves and Becky Kelliher joined Kerry Kavanaugh to discuss a condition that causes excruciating burning pain after just minutes of sun exposure.
The women described what daily life is like living with the condition, Erythropoietic Protoporphyria or EPP, and the constant need to avoid sunlight, even during routine activities.
Both women also discussed participating in clinical trials for a drug, Bitopertin, designed to treat the condition. They explained how the treatment has impacted their lives and offered hope for greater independence and relief.
However, the women said the Food and Drug Administration recently declined accelerated approval of the drug. They addressed what that decision means and what comes next for patients still waiting for treatment options.
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