#erythropoietic-protoporphyria

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Marin Independent Journal
8 months ago
San Jose Sharks

Why hockey's been a sanctuary for a 12-year-old Sharks fan battling a rare disorder

Hockey provides a safe place for Addison Kypreos, who has Erythropoietic Protoporphyria, a sun-related disorder that causes acute, painful photosensitivity.
The Kypreos family has learned that Addison has Stage 5 liver failure, a dangerous side effect of EPP, and she will eventually need a liver transplant. [ more ]
www.mercurynews.com
8 months ago
San Jose Sharks

Hockey's a sanctuary for a 12-year-old girl battling a rare disorder and liver failure. Here's what the Sharks did for her

Addison Kypreos, who has a skin disorder called Erythropoietic Protoporphyria (EPP), got the chance to meet her favorite hockey team, the San Jose Sharks.
Addison's condition causes acute photosensitivity to UV light, making it important for her to protect her skin from the sun. [ more ]
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