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
United Porphyrias Association. United Porphyrias Association · Original audio. 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 ...
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Spoiler: Yes, Candace is fully covered — even if it’s 86°F / 30°C 😅 ☀️ Sun can hurt her skin, even through windows. Candace shows us what it really takes to get ready with Erythropoietic Protoporphyria. Sun protection isn’t optional—it’s survival. 👉 Living with a cutaneous porphyria? Join our community for tips, support & connection 💜 #UnitedPorphyrias #PorphyriaTogether #Porphyria #RareDisease #Research #RareDiseaseAwareness #ChronicIllness #skin #skincondition #skinprotection #sunexposure |
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Spoiler: Yes, Candace is fully covered — even if it’s 86°F / 30°C 😅 ☀️ Sun can hurt her skin, even through windows. Candace shows us what it really takes to get ready with Erythropoietic Protoporphyria. Sun protection isn’t optional—it’s survival. 👉 Living with a cutaneous porphyria? Join our community for tips, support & connection 💜 #UnitedPorphyrias #PorphyriaTogether #Porphyria #RareDisease #Research #RareDiseaseAwareness #ChronicIllness #skin #skincondition #skinprotection #sunexposure |
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Spoiler: Yes, Candace is fully covered — even if it’s 86°F / 30°C 😅 ☀️ Sun can hurt her skin, even through windows. Candace shows us what it really takes to get ready with Erythropoietic Protoporphyria. Sun protection isn’t optional—it’s survival. 👉 Living with a cutaneous porphyria? Join our community for tips, support & connection 💜 #UnitedPorphyrias #PorphyriaTogether #Porphyria #RareDisease #Research #RareDiseaseAwareness #ChronicIllness #skin #skincondition #skinprotection #sunexposure |
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