Acute Hepatic Porphyria - Two of Me Documentary | Pinpoint AHP®
Acute Hepatic Porphyria - Two of Me Documentary | Pinpoint AHP®
2022年2月25日
porphyria.com
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 ge…
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Rare Disease Week is here, and the zebras have arrived! 🦓✨
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Rarely Discussed on Instagram: "This is PORPHYRIA WHAT IS PORPHYRIA? Porphyria is not a single disease but a group of eight inherited genetic disorders that differ considerably from each other. A common feature in all Porphyrias is the accumulation in the body of porphyrins and porphyrin precursors. Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends on the type of Porphyria. This clip is from a documentary trailer calle
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