Hong Kong Profile: Mui Thomas – Rugby referee with harlequin ichthyosis

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It’s less than a minute into our interview when the subject of Mui Thomas’s life expectancy comes up. Afflicted with the rare skin condition harlequin ichthyosis, Thomas calmly mentions that the eldest living person with the disease is just 31 and laughs when she says, “And I’m 23! It’s kind of crazy.” Despite battling bullying, the awkward looks of strangers and a somewhat uncertain future, Thomas radiates an incredible optimism. Pushed as to whether she might be tempted to wish for a different life, her answer is immediate. “No. And I’ll tell you why. Because if I had a different life, I’m sure I wouldn’t have what I have now – contentment. I would not be adopted. I would not have had the opportunity that I’ve been given. So no.”

Harlequin ichthyosis causes scaly skin, which cracks creating open wounds that leave suffers vulnerable to infection. “The skin turnover is overnight,” relates Thomas. “So, the rate an average human being would grow skin – if they don’t really look after themselves – in about two weeks, that happens to me overnight.” Poor immunity is Thomas’s biggest concern, but she dismisses any worry about injuries by telling us, “You clean it up, you put some cream on and you carry on.”

Contrary to her seemingly limitless optimism, the 23-year-old has, unsurprisingly, endured many hard times. When Thomas was younger there were hospitalisations and constant fevers – ‘because I can’t regulate my temperature as well as most people’ – but most upsetting of all was the school cyberbullying. “When you’re 13 or 14 and you’re getting messages like ‘Nobody likes you, maybe you’d be better off dead’ or ‘Your parents didn’t really want to adopt you’, it’s a reason to commit suicide. There’s only so much that you can take.” Asked how she overcame such horrid taunts, Thomas replies, “My parents. Simply my parents.”

Tina and Roger Thomas adopted Mui when she was three-years-old, and it was her Welsh father who eventually sparked his daughter’s interest in rugby. “Rugby is kind of a way of life, it’s our national thing,” says Thomas, obviously proud of the heritage she now claims. In her teens she decided she’d like to get fit and participate in the sport. That was the plan until her parents pointed out the unlikelihood of anyone attmpting to tackle her. “They were all, nobody’s gonna tackle somebody with a skin condition,” recalls Thomas. 

Now the referee for a majority of the territory’s under-12 games and aspiring to greater accomplishments in the sport, Thomas began her training as a 19-year-old. “Somebody suggested I try coaching and I was like, I can’t really do that, mate, because I’m not player. So somebody else said I could try refereeing, which was a bit revelation to me because I thought – I don’t know the game. How could I possibly referee?” Undeterred, Thomas began her Level One coaching course and last year, four years on, she received the Hong Kong Rugby Union’s (HKRU) referee award for being ‘inspirational in overcoming life’s challenges and adversities’.

Thomas is full of praise for the HKRU, stating ‘the HK Rugby Union does a lot to promote social inclusion’. Going further she adds, “You don’t have to be a player, there’s so much one can get involved with… [The HKRU] have got a hearing impaired team now. They’re working in local schools, they’re working with correctional facilities. It’s great. I’m very happy to be a part of that.”

Away from the rugby pitches, Thomas has been working on a book about her experiences with cyberbullying, The Girl Behind The Face. “When you’re being cyberbullied, your house is no longer safe. Bullying invades your house through computers,” laments Thomas. Written by her father, with her contributions, the book seeks to help those suffering from cyberbullying overcome the attacks and to come out the other end with a smile on their face – much like Thomas. “It’s sort of a biography,” she tells us. “This is how we overcame our troubles. If our solutions can help or inspire somebody, that’s great.” Currently unpublished, the book has a Facebook page with 12,000 likes to help publicise it. “And I’m still stunned by the support,” remarks the 23-year-old.

Although Thomas has managed to shrug off many of the blows life has dealt her, there remains a vulnerability beneath her smile. “If you see somebody visibly different, remember that they are just people. They have feelings as well,” she says, recalling disheartening moments when people have taken obvious fright at her appearance. “If I can say one thing to your readers – if you see someone who’s different, or someone who is struggling or going through turmoil, stick a hand out, see what you can do to help. We all need help to survive, man!"

Author: Douglas Parkes. Additional reporting by Krshna Moriani

For more information on The Girl Behind The Face visit fb.com/GirlBehindTheFace.

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