#sun-related-disorder

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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 ]
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