Mui Thomas is a special needs teacher and a referee for the Hong Kong Rugby Union.
And everywhere she goes, it seems she gets a momentary stare. That’s because the 22-year-old Hong Kong native is one of only a few people in the world with the skin disorder harlequin ichthyosis. It is a rare and sometimes deadly genetic disease that makes her skin grow 10 times faster than the average person’s, often resulting in painful cracks and itchiness.
“My parents always tried to distract me from my itchiness and my pain,” Muitold Coconuts Hong Kong.
But Mui has refused to let that disease define her. Instead, she is known for an energetic and positive personality that leaves her waving and smiling at the people who can’t help but stare. Then, this summer, she and her foster parents took to the TEDx stage to discuss their decision to adopt her and their life together since.
“When we met Mui, doctors told us very bluntly, ‘She’s not going to live very long, she’s going to die within the first years.'” her mother, Tina Thomas, said in the TEDx talk. “The oldest survivor in the world with harlequin ichthyosis is now 31 years old. Mui, aged 22, is the fourth oldest in the world.”
Mui’s disorder usually comes with one or two infections a month. She’s become so familiar with them that most of the time she can self-medicate with her own topical antibiotic creams. But the tiny abrasions that cover her body — only slightly deeper than paper cuts — are a constant pain.
Recently, Mui started a petition to end shock videos on YouTube after a short clip called “15 Terrifying Rare Birth Diseases” showed a picture of her without her permission.
“I hope that people will be more accepting of those with visible differences and with special needs,” Mui said. “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.”