06/11/2026
is 20 years old and lives with Variegate Porphyria (VP), a rare genetic disease that most people have never heard of.
For years, she’s lived at the intersection of identities and experiences that are often misunderstood. As a young person with a rare disease, she has frequently been met with assumptions: that she is too young to be sick, that if she looks okay she must be okay, or that her rare disease is too unlikely to be real.
At one point, Hailey was almost completely paralyzed by porphyria. “Sometimes,” she says, “I think that experience never fully ended.” ❤️🩹
She says there’s a different kind of paralysis: one that comes from constantly having to explain yourself, defend your symptoms, and fight to be believed.
There is a lot that having a rare disease and being q***r have in common, explains Hailey. “Being q***r and living with a rare disease can feel like speaking a language nobody around you understands. Q***r lives are real even when others don’t understand them. Rare diseases deserve attention even when they affect only a small number of people.”
Hailey’s story reminds us that visibility is not just about being seen, it’s about being understood, believed, and respected 💜🌈
