CEP (Congenital Erythropoietic Porphyria) is an extremely rare genetic disease that causes severe photosensitivity, blistering, scarring, and long-term damage to the skin and eyes. For people like Justin, CEP means living fully covered to survive the sun. It means adapting daily life, losing abilities over time, and facing a disease with no true treatment, only ways to manage the damage. Most people have never heard of CEP. This is why it matters 💜 Sharing Justin’s story is about visibility, un
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CEP (Congenital Erythropoietic Porphyria) is an extremely rare genetic disease that causes severe photosensitivity, blistering, scarring, and long-term damage to the skin and eyes. For people like Justin, CEP means living fully covered to survive the sun. It means adapting daily life, losing abilities over time, and facing a disease with no true treatment, only ways to manage the damage. Most people have never heard of CEP. This is why it matters 💜 Sharing Justin’s story is about visibility, un
428.7K views4 months ago
FacebookUnited Porphyrias Association
Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
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Growing Up ‘Allergic to the Sun’ - Erythropoietic Protoporphyria
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YouTubeChildren's Hospital Los Angeles
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Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-sensitivity disorder causing immediate severe pain upon sun exposure, for decades undiagnosed in sunny Saskatoon. Forced to remain indoors, he sought rare disease organizations, leading him to a clinical trial at Massachusetts General Brigham. There, he met Dr. Amy Yeung, an attending physician at Massachusetts General Hospital and Harvard Medical School assistant professor who also has EPP. The trial drug, Bitopertin, decreas
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Kris Kinar lived with Erythropoietic protoporphyria (EPP), a rare sun-sensitivity disorder causing immediate severe pain upon sun exposure, for decades undiagnosed in sunny Saskatoon. Forced to remain indoors, he sought rare disease organizations, leading him to a clinical trial at Massachusetts General Brigham. There, he met Dr. Amy Yeung, an attending physician at Massachusetts General Hospital and Harvard Medical School assistant professor who also has EPP. The trial drug, Bitopertin, decreas
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