Only one in 500,000 people in the world are born with harlequin ichthyosis. Mui Thomas, 26, of Hong Kong is one of those people.
“Harlequin ichthyosis is a very rare genetic skin disorder,” Mui told InsideEdition.com. “My skin multiplies 10 times faster than normal skin. My skin sheds daily, I’m susceptible to infections and I am, to my knowledge, the only person in Hong Kong with the condition.”
Mui, a yoga instructor and rugby referee with an interest in special education, has a slightly different routine than her friends because of the condition.
To manage her skin shedding, Mui scrubs her skin vigorously in the shower and applies creams daily.
Harlequin ichthyosis also means her body has trouble adjusting to temperature and Mui needs a higher caloric intake than people without the condition to keep up with the rate of her skin growth.
While Mui has a handle on her day-to-day routine, she said the most difficult part about living with the condition is dealing with stares and negative attention.
“People think I’m in pain, or that I’m burned, or that I must be contagious,” Mui said.
From amusement parks to restaurants, Mui explained that facing hurtful comments happens nearly every day.
“I try so hard to live a normal life as I possibly can and when people do things like that, when they shout, scream, run away, it just makes me feel like I really stick out,” she said.
Her battle to live a normal life began when she was just a baby, and she said she was abandoned by her birth parents because of how complicated the condition would be.
Her parents, Rog and Tina Thomas, came across Mui while doing some volunteering for social services.
“I remember when we met her for the first time, it was absolutely fantastic, we had a wonderful visit,” Tina told InsideEdition.com. “However, from there onward, the next nine months were very traumatic. With her abandonment issues, Mui found it hard to cope with the fact that I had been away.”
“She got very wild, she got very aggressive, she would rip out hair, tear out skin, she would run away, and this would go on, what, 40 minutes? That she would scream and shout and run, she would smash her head into a pillow, it was absolutely terrible to witness,” Rog said.
They eventually went on to adopt Mui, and were faced with a new set of challenges in raising someone who looks a little different.
“When she was very young, I remember carrying her as a baby in our little village here and a woman came up to me and spat in my face, because I obviously had burned my child and I was a bad mother,” Tina recalled.
They also ran into the trouble of looking for doctors that understood her condition and schools that would accept her.
But they continued the fight for normalcy as a family, and now hope to support other families living under similar conditions with their campaign, The Girl Behind the Face, where they help people understand who Mui is apart from her condition.
“It’s how we deal with all the rolls and punches we’ve had to overcome in our life,” Mui said. “Hopefully, me talking about my experiences and me talking about how people still discriminate against me, it can maybe make some people think a little more.”
[“source=insideedition”]
