By Rafaela Kuznec @RafaelaKuznec
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Videographer / director: Edwin Lee
Producer: Rafaela Kuznec, Ruby Coote
Editor: Marcus Cooper
Mui Thomas, who resides in Hong Kong, suffers from a rare skin disorder called harlequin ichthyosis.
Harlequin ichthyosis causes scaly skin, which cracks creating open wounds that are vulnerable to infection.
The oldest survivor of harlequin ichthyosis is 35 years of age.
At 26 now, Mui is one of the oldest known survivors and the world's first rugby referee living with this condition.
Mui told Barcroft TV: “I don't sweat - my sweat glands are not as much developed as ordinary people.
“If I don’t drink enough I will either get too hot or just dehydrate because my skin would dry out.”
Mui’s disorder causes her skin to grow very thick, with deep, painful cracks and causes the skin to grow at 10 times the normal rate.
Mui must take daily two hour baths in an attempt to scrub off layers of dead skin and apply ointment routinely throughout the day.
She said: “I always carry cream in my bag because it is important for me to remain moisturised, whenever I feel dry I just take the tub out and I will just put some cream on and then I am good to go!”
When Mui was born, she was abandoned by her biologically parents and adopted by her now parents Rog and Tina Thomas, who started to care for Mui when she was one and a half years old.
Growing up Mui has experienced a lot of bullying and discrimination.
She said: “I think one of my biggest challenges so far is going out sometimes because people will often stare and point at me and it’s really horrible because I just want to go out and live my life and be normal in the most literal sense, but it doesn’t work when people shout and scream at me so it gets me really down.
“There were a couple of times when mothers have covered their kids’ eyes and they just ran away or they walked away or grabbed onto their boyfriends or husbands to run away.”
When she was a teenager, Mui suffered intense cyberbullying and found herself so down that she thought of suicide.
Mui said: “I wrote a suicide note and I gave it to mum.
“I was heartbroken, I just thought if nobody wanted me around, nobody wanted me alive then I thought the best thing I could do would be to end it all, but thanks God I am not dead.”
Mui’s mother, Tina Thomas, told Barcroft TV: “Her spirit was completely broken and she wanted to give up and it took a long time to build her up that she felt good again to go out there and face people.”
Mui’s parents helped her through the dark times and together they set up ‘The Girl Behind The Face’ Facebook page in an attempt to help educate people on Mui’s disorder.
The Thomas family is now planning to publish a book by the same name written by Rog with Tina’s and Mui’s contribution.
Mui’s dad, Rog Thomas, said: “The idea of the book is to raise awareness on cyberbullying and discrimination.”
Mui said: “Hopefully we will also be able to continue raising awareness and be a voice for people who sometimes might not have a voice through any particular reason.”
Today Mui works as a special needs teacher, and in her time off, as a rugby referee.
She is also taking professional yoga instructor classes.
Mui said: “I feel like I can empower others to do what they want to do.
“I think that a lot of people think that having a skin condition like harlequin ichthyosis limits you, but I am here to show others that you can do whatever you want as long as you have the mind for it.”
Despite the hardship that Mui and her family have endured, she doesn’t let her condition to discourage her and today Mui’s goal is to encourage and inspire others living with similar visible conditions.
Mui said: “My hopes for the future is for me to become a stronger person, hopefully to reach a wider audience with what I do, with advocacy and just simply living my daily life.
“I don’t really look at what happened in the past, the main focus is looking at what’s in front of me.”