26-year-old woman's skin sheds 10 times faster than average
Right after Tina and Rog Thomas had adopted their daughter, Mui, a stranger approached Tina — who was carrying the child — and spat in her face.
"She said I had obviously burned my child and I was a very bad mother," Tina told Inside Edition.
The misconception was one of the hundreds of hurtful comments Mui has heard over the last 26 years in regards to how she looks. Only 1 in 500,000 people in the world are born with the genetic condition called harlequin ichthyosis, and Mui is one of them.
"It's a very rare skin disorder," Mui explained. "My skin multiplies 10 times faster than normal skin."
Typically, those diagnosed with harlequin ichthyosis don't survive infancy — Mui is the fourth oldest survivor ever recorded with harlequin ichthyosis.
The condition leaves Mui very vulnerable to infections, constant shedding and also makes it hard for her to adjust to different temperatures. Her morning routine requires at least 10 to 20 minutes of scrubbing off excess skin in the shower. Mui also needs to consume a higher caloric intake to keep up with the rate of her skin growth.
But the worst part, she says, is the way people treat her.
"Coping with people's reactions — that's always quite difficult," she told Inside Edition.
Like the woman who spat on Tina, people assume the worst when they see Mui. They either think she's been burned or is contagious. Sometimes people will scream and run away.
She has also faced difficulty finding doctors who understood and could handle her condition, as well as schools that would accept her.
But Mui isn't letting any of it define her. She fights for normalcy every day, and in addition to being a yoga instructor, she works as a rugby referee and helps children with special needs.
Mui and her parents also started The Girl Behind The Face, an initiative to raise awareness of physical conditions, which also operates as an anti-cyberbullying platform. The family hopes The Girl Behind The Face will open up more conversations about harlequin ichthyosis, and that sharing their story can normalize their experience.
Watch the full Inside Edition interview above to learn more about the Thomas family and Mui's life.
