One amazing woman with a skin condition is teaching the world about kindness
Mui Thomas is a 22-year-old woman who has a full-time job working with people with special needs. She is also a volunteer referee for kids’ rugby matches and will soon be embarking on a career as a public speaker. In fact, she has a TEDTalk coming up about the skin condition she suffers from — a condition that caused her substantial emotional pain and isolation all throughout her teenage years. If you were wondering what makes a hero, those are some of the key ingredients.
Mui was born with ichthyosis, a skin condition that results in incredibly thick, dry, and flaky skin; making her skin resemble fish scales and rendering her unable to sweat. Mui has the most severe type, Harlequin ichthyosis, which is extremely rare, and she’s been battling it her whole life.
She was abandoned at birth, and fostered by expats Tina and Rog Thomas in Hong Kong when she was only one and a half years old. Doctors told the couple that Mui likely didn’t have long to live due to her condition. But under the Thomas’ loving care, Mui thrived and they formally adopted her at three years old. Mui grew up wanting to be a fashion model, not knowing that her skin condition made her particularly different. “I really don’t think I knew that I didn’t look like everybody else,” she told CNN.
Now, she’s thought to be the fourth oldest person alive with her form of the condition — the oldest is 31. The condition forces her to bathe twice a day and carry four tubs of cream around with her so she can keep her skin from drying out.
School was, sadly and unsurprisingly, where the real nightmare began for Mui. Her classmates started bullying her, both in school and on the Internet. “They’d say things like ‘You shouldn’t have been born’ — and very personal things that only people who knew me would know,” she told CNN.
In fact, the worst cyberbullying episode lasted 10 months, and at the end of a police investigation, Mui discovered that the perpetrator was someone she had thought was a friend. “It made me very wary of everybody,” Mui said. “Even when people tried to be nice, I didn’t repay it. I didn’t trust them.” At one point, Mui lost the will to live. She stopped bathing, taking her meds, and applying the cream, trying to deny the existence of her illness. Mui left school with no qualifications, but that’s not where her story ends. In fact, that’s only the beginning.
Since those bullying days, Mui’s life has gotten so much better. She’s found a job she’s passionate about and is devoted to helping and inspiring others both through her refereeing (she keeps an awesome blog about being a ref) and her burgeoning public speaking career. Her father even wrote a book about her, The Girl Behind The Face, which the family is still trying to get published. The book “explores special needs, acceptance, overcoming trauma in life, resilience and coming out (hopefully!) smiling,” Mui writes on her blog. “The hope is that through this, people will be encouraged by our story and know that it’s okay to smile and try to embrace life. “ “Of course not everyone is quite able to let go of tough times so easily,” she adds, “but I hope that the book also raises awareness of acceptance of others in an otherwise cruel society.”
Tomorrow, Mui will be talking about her life and journey at TEDx Hong Kong and we can’t wait to hear her incredibly strong story.
“It’s difficult for her because she spent so long denying [her illness],” her father explained to CNN about her pending speaking engagements. “The more she confronts it, the more she is aware of it — it will build confidence.” Mui has already spoken to students at schools and colleges about the dangers of cyber-bullying and the importance of sharing your story and loving yourself.