Laurel Chor is a freelance journalist, photographer, and filmmaker based in Hong Kong. A National Geographic Explorer, she has reported from more than 20 countries around the world. In the past, she has worked for the New York Times, the Los...
Anonymity is not a luxury allowed to Mui Thomas. Wherever she goes, the 22-year-old special needs teacher and rugby referee’s pink, scaly skin attracts stares.
Mui has harlequin ichthyosis, an extremely rare, severe genetic disease that causes the skin to grow very thick, with deep, painful cracks. The name of the disorder itself, “ichthyosis” – which comes from the Greek word for “fish” – refers to the “scales” that cover sufferers’ bodies.
Mui is now a special needs teacher at the Rock Foundation in Wan Chai, and a referee for the Hong Kong Rugby Union (HKRU). She hopes to one day become a rugby referee for international matches, a goal she works towards by moving up the referee hierarchy in the city.
She is one of the oldest people in the world with harlequin ichthyosis and the only sufferer in Hong Kong. Babies born with the disorder often die in their early childhood without proper treatment.
Fortunately, with medical advances – such as topical creams to keep the skin moisturised, and oral retinoids to slow down the growth of her skin cells – chances of survival have improved dramatically, and no one knows how long those with the ailment may live, or even if their lifespans are limited at all compared to the general population.
These days, she has people coming up to her on the street and contacting her online to tell her what an inspiration she’s been to them, and though she’s still getting adjusted to the attention, she plans to use her story to help others.
“I hope that people will be more accepting of those with visible differences and with special needs. And know that even though they look different, they’re still people.”
“Hopefully, for people troubled with difficulties, our story can offer the sort of hope and support that would get them out and running again.”