You may fret over minor insecurities, such as love handles or an unwelcome rash, but 22-year-old Mui Thomas doesn’t have the luxury of wishing away any perceived insecurities, for she’s been living with a skin condition since birth that turns her skin pink and scaly. But as the ambitious special needs teacher and rugby referee will tell you herself, beauty will only get you so far in life; it’s what’s in your heart that truly matters.
Thomas has a rare skin condition called harlequin ichthyosis, which is a severe genetic disease that causes the skin to grow very thick, with deep, painful cracks. As HongKongCoconuts reports, the name of the disorder itself, “ichthyosis” – which comes from the Greek word for “fish” – refers to the “scales” that cover sufferers’ bodies.
Her energetic and bold persona may shock some upon first meeting, but she has chosen not to let the disorder get the best of her or sway the way she lives her life. Of course, comments and stares often bother her, but she tends to return the glance with a smile or a little wave. She speaks boldly and loudly, and talks about her disorder as if it is an afterthought, rather than the crippling disease it can be.
“Don’t let anything stop you. Don’t let your disabilities stop you – visual appearances, etc… At the end of the day, you’re out there to have a good time. Sod everybody else!”
Thomas is one of the oldest people in the world living with the disease and is the only known sufferer in Hong Kong. 31-year-old Nostril Shaheen, a British woman, is believed to have survived it the longest. Until recently, Mui and her parents thought that she was the only one in Asia to live with the skin condition, but now they are aware that there are other sufferers on the continent.
It’s unfortunate, but most babies born with the disorder often die in their early childhood because they do not receive proper treatment. Fortunately, with medical advances, chances of survival have improved dramatically, but one must depend on topical creams to keep the skin moisturized and oral retinoids to slow down the growth of skin cells. At present, no one really knows how long those with the ailment may live, or even if their lifespans are limited at all compared to the general population.
While many people deprive themselves of public outings for the simplest of reasons, Mui doesn’t let her skin condition stop her from living life to the fullest.
“I never really thought about it myself,” Thomas said, sitting in a café with her parents. “I just think: ‘Well, I’m still here.’”
Her parents, Tina and Roger Thomas, who adopted Mui in Hong Kong when she was three years old, share her optimism. Said her father:
“If she maintained good healthcare then there was no reason that she shouldn’t have just as much opportunity as another kid. There is every reason that we can hope for the future.”
As Mui shares in the video above, she is determined to not let any criticism stop her from going after her dreams. Her parents have played an important role in helping her shape such a strong and positive mindset.
“We’ve also very much instilled in her [the importance of] enjoying the world,” Tina said. “You know, the carpe diem thing. You don’t know what’s around the corner, for any one of us.”
Thomas is now a special needs teacher at the Rock Foundation in Wan Chai, and a referee for the Hong Kong Rugby Union (HKRU). One day, she hopes to become a rugby referee for international matches. She has been working toward this goal by moving up the referee hierarchy in the city for years. And recently, Mui received the “inspirational in overcoming life’s challenges and adversities” referee award from the Hong Kong Rugby Union.
Talk to any accomplished individual, and you’ll learn that their secret is to transform obstacles into opportunities. The referee’s go-lucky attitude was molded from the pain she endured, both physical and psychological, throughout her life.
Once or twice a month, Mui will get an infection which she manages on her own with topical antibacterial creams. Her body is constantly covered in small abrasions slightly deeper than paper cuts, and she gets at least one or two more serious cuts per month.
But throughout the pain, she is strong. As a child, her parents tried to distract her from the pain and itching, and Mui has learned that there are always more positive things once can focus on while enduring the rough times in life.
“They really are amazing, and I really would definitely not be anywhere without them because they really are my rock,” Mui said about her parents.
It was by chance that Tina and Roger adopted Mui, and when she now receives attention for being who she is and living so boldly, it’s the entire family that takes credit. Together, they keep each other strong, and they are sure to tell any news source just that.
And the parents have endured their own hardship in raising Mui, as well. Once, Tina was spat in the face by a woman who accused her of burning their adopted daughter. What people do not understand, they often fear.
That’s why when Mui was a teenager, she became the subject of cyber-bullying and in-school discrimination.
“I don’t think I ever really got over it,” Mui said about her early encounters with bullying.“I think I still do have a bit of a tendency to block things out, because I try to be positive… But, sometimes, it still gets to me.”
She definitely still receives worried glances from people who do not understand her condition, but for the most part, has learned to accept herself as she is. In doing so, she is inspiring millions around the globe.
“I’m trying to live my life,” she said. “You know, I know I look different. But is it really necessary to look at me in the way that you’re looking at me?
All in all, the inspirational athlete and teacher is proving to even the most insecure that it’s your attitude that matters in life. No matter what, go after your dreams and don’t let anyone deter you from living a life you love.
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