WHAT’S BEING CLAIMED:
- Mui Thomas, 26, was born with a very rare skin disorder that makes her skin shed “10 times faster than normal skin.”
- The excessive shedding leaves her vulnerable to infections and sensitive to changing temperatures.
- People usually assume the worst and treat her badly because of her physical appearance, but the strong Mui doesn’t let others deter her.
Tina and Rog Thomas had just adopted their daughter, Mui, when a stranger suddenly approached them and spat at Tina’s face.
Tina told Inside Edition that the stranger wrongfully assumed that she was “a very bad mother” who “obviously burned” her child.
And as Mui grew, she constantly heard hurtful comments over her appearance.
She had been born with a rare genetic condition called harlequin ichthyosis, which manifests in only 1 in 500,000 people in the world.
Those with the condition usually don’t survive infancy. At 26 years old, Mui is now the fourth oldest known survivor with harlequin ichthyosis.
Mui explained that the “very rare skin disorder” causes her skin to multiply “10 times faster than normal skin.”
Mui said her morning routine involves at least 10 to 20 minutes of scrubbing off excess skin in the shower. The constant shedding leaves her very vulnerable to infections and sensitive to changing temperatures. To keep up with her rapid skin growth, she needs to consume a higher caloric intake.
Mui told Inside Edition that the worst part of it is how people treat her. She said, “Coping with people’s reactions — that’s always quite difficult.”
People who see Mui just jump to the worst conclusions. They assume that she was burned or is contagious. Some people even scream and run away.
It was also difficult to find doctors who can understand and handle her condition. She also had a hard time finding schools that would accept her.
But the strong Mui doesn’t let others deter her.
Aside from being a yoga instructor and a rugby referee, she also helps kids with special needs.
Mui and her family also started the anti-cyberbullying initiative called The Girl Behind The Face, which is aimed to raise awareness of physical conditions.
The family hopes that it will help spark more conversations about harlequin ichthyosis and normalize their experience.