Being Bullied For A Rare Skin Condition Won’t Stop Mui Thomas From Building Hope In Others

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Everyone has trials in their life, that’s just a given. But some people experience difficulties in a larger scale, and it certainly forces you to put things into perspective in our own lives. An advanced cancer diagnosis gives a person an immediate sense of urgency when it comes to spending time with loved ones and appreciating the moments you have in life. But what if you experienced something that wasn’t necessarily near death, and was a life-long situation?

That’s something Mui Thomas, a 22 year old young woman from Hong Kong is very familiar with. You see, she was born with a super rare skin condition which was only the start of a series of events that led her to become the inspirational woman she is today.

At birth, her parents abandoned her but an ex-pat couple living in Hong Hong, Tina and Rog Thomas, adopted her despite being told she didn’t have long to live. Mui has Harlequin ichthyosis, a skin condition which means her skin is extremely thick, dry and flaky — resembling fish scales. She can’t sweat but she can shed tears.

The oldest person in the world on record that has the same condition is 31, so it remains to be seen how long a person can live with Harlequin Icthyosis.

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Every day she has to bathe twice, and carries a backpack with a certain type of skin cream which she must keep applying throughout the day. As she was growing up, she was teased and today still gets all sorts of stares in public, something which Mui is well used to by now. But it wasn’t easy.

During secondary school she became the victim of some vicious cyber-bullying and it got so bad that she started receiving messages saying she shouldn’t have been born. It almost drew Mui to take her own life, and despise her own appearance.

The worst part was not being able to make friends easily at school because the teachers insisted she have special treatment. She ended up leaving school without any qualifications due to a bullying incident which was then investigated by police. After 10 months they found out the person who was bullying Mui online was someone she knew. It was devastating for her, and the school didn’t make any special effort to help her stay and finish her studies.

“It made me very wary of everybody. Even when people tried to be nice, I didn’t repay it. I didn’t trust them. I still wish I had got a very hard kick up the backside from the teachers when I wasn’t doing work,” she told CNN.

On paper it would seem the odds were stacked against Mui, but there is something to be said for the sheer power of the human spirit. The determination to beat those odds, coupled with the love and support of her parents has enabled Mui to hold a full-time job working with disabled people, and start a career as a public speaker.

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She recently gave a TEDx Talk in Hong Kong with her parents about cyber bullying and her experience in life being “visibly different”. Her father has written a family memoir called ‘The Girl Behind The Face‘ and is hopeful that the more Mui shares her story publicly, she too will be empowered in a whole new way.

“It’s difficult for her because she spent so long denying it. The more she confronts it, the more she is aware of it — it will build confidence,” he said.

In a twist of irony, Mui shared with CNN that as she was growing up she always wanted to be a model and never knew she looked different from anyone else. And now she might possibly take part in a fashion show with people who have visible differences, reiterating the notion that just because something is one way and everyone subscribes to it, doesn’t mean someone can’t come along and change the definition to benefit more people.

The reason we wanted to share Mui and her family’s story here was A) because we love empowering journeys that teach us we are all different for a reason, and the trials we experience are uniquely shaped to allow us to grow and help other people. And B) because the Thomas family are looking for a publisher for their book and by sharing and liking their Facebook Page they are hoping to secure a deal in order to share Mui’s story with a much larger audience.

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Mui is a huge football fan and blogs about her passion and other aspects of her life on her site ‘The Adventures of an Ichthy Ref‘ where she talks regularly about her love of sport, fashion and shares about her friends and community happenings.

But she also gives some insights into some of the things she feels as she goes on this journey in the public eye.

“I’ve struggled a lot this year with accepting who I am and what defines me. It’s taken trials and tribulations to realize that life is not a bunch of roses and hard work needs to happen to make things (positive) happen. I’m so afraid of failure (which is ironic) that sometimes I block all that is bad in the world and focus on the good things,” she wrote.

“I was so frightfully nervous about opening up about my ichthyosis on Facebook because I’ve tended to use Facey as a platform for my hang ups and unhappiness at the world.  But I’ve realized that through forums and such like, there are plenty of people in the same boat as I am, and that it’s okay to ask for advice from others regarding lifestyle and skin care. And I’ve realized, now, that ichthyosis is just another thing that makes us unique in who we are.”

In another post talking about her dad’s book she talks about wanting to help other people who may have experienced what she has so far in her life.

“‘The Girl Behind The Face’ is a book that explores special needs, acceptance, overcoming trauma in life, resilience and coming out (hopefully!) smiling. 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, but I hope that the book also raises awareness of acceptance of others in an otherwise cruel society,” she wrote.

We are so in awe of Mui who is a wonderful example of being brave despite feeling the opposite, and she is a young woman who knows the power of her unique story can inspire and instill hope in many other people around the world who do not know where to find it. It is a great reminder to us that we could choose to look at our difficulties as something to ignore and be afraid of, or choose to see them as our greatest teachers in life.

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2 Comments

  1. Jan henderson says:

    Well what a wonderful mission you have embrassed! The world is a better place with you in it. Tks for being you.

  2. novie taylor says:

    Quite right Mui. life is not a bunch of roses but it is still a gift. keep up focusing on the positive side. you have no idea how many lives you have already inspired. and btw, you’ve got great smile 🙂

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