26-year-old woman's skin sheds 10 times faster than average

Right after Tina and Rog Thomas had adopted their daughter, Mui, a stranger approached Tina — who was carrying the child — and spat in her face.

"She said I had obviously burned my child and I was a very bad mother," Tina told Inside Edition. 

The misconception was one of the hundreds of hurtful comments Mui has heard over the last 26 years in regards to how she looks. Only 1 in 500,000 people in the world are born with the genetic condition called harlequin ichthyosis, and Mui is one of them.

"It's a very rare skin disorder," Mui explained. "My skin multiplies 10 times faster than normal skin."

Typically, those diagnosed with harlequin ichthyosis don't survive infancy — Mui is the fourth oldest survivor ever recorded with harlequin ichthyosis. 

The condition leaves Mui very vulnerable to infections, constant shedding and also makes it hard for her to adjust to different temperatures. Her morning routine requires at least 10 to 20 minutes of scrubbing off excess skin in the shower. Mui also needs to consume a higher caloric intake to keep up with the rate of her skin growth.

But the worst part, she says, is the way people treat her.

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Mui Thomas, 26, struggles with rare skin condition harlequin ichthyosis
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Mui Thomas, 26, struggles with rare skin condition harlequin ichthyosis
It’s #worldmentalhealthday. I’ve been fairly open with you guys about my struggles with accepting who I am and what I have had to overcome and continue to work on. Remember, just because someone is smiling and laughing, doesn’t mean they are necessarily happy. They can hide behind a facade. I have a facade. I often hide myself behind a mask (so to speak), why? Because sometimes I just think the world doesn’t need to know all of my struggles. But it does mess with my health. But every now and then, check in with friends and family. They might just need it. #itsokaynottobeokay #howokayareyou
Received a lovely comment tonight from a close friend of someone I work for. “They won’t say it to your face, but she has told me that you’re the best thing to happen for her son”. Half the time I make things up as I go along, sometimes my line of work is a lonely and thankless task. Sometimes I hit myself against a metaphoric wall, but comments like this do lift me. ❤️❤️
What we share: As you guys know, I have a platform. Both personally and with my family. I have been open with my struggles with growing up s someone who in theory sticks out in society. I am open about my #skin #mylife #cyberbullying, the list goes on. But I also hold back a lot of personal things. Why? Because there are just some things the world doesn’t need to know. There isn’t a value add. When I was younger, I’d post all the time on line. I’d be talking about what I had for dinner to whether I was on the toilet. As I got older and discovered that social media keeps a backlog of what you post, I was quite frankly horrified with what I was writing. Then also comes the fact that I was horrendously bullied online because of who I am. This made me be more on edge about putting myself out there. That is why now that I’ve had the chance to learn, almost everything I share to you and the world is somewhat curated. I don’t want to read or see weird stuff I did back then. I want to cherish the memories I make with friends. I want to look back on my social media in 10 years and have no regrets about why I’ve posted. I want to smile and laugh, not wince in shame. I love sharing bits of my life with you all. Thank you for being with me on my journey. #cyberspace #awareness #acceptance #coolsnapshot #referee #harlequinichthyosis #hk
What a wonderful way to graduate after 10 months of early mornings with your best friends by your side. These girls have seen my transformation from exactly 12 months ago and I am so thankful to everyone who pushed and prodded and cajoled me through my YTT. I am thankful for their understanding when I couldn’t find the energy to drink after a long day. Cant wait to see how #yoga and #refereeing can be used together. I’m excited!!! Can’t wait to see my parents later as they get back from Vietnam! 🙏 Look out for a post from @thegirlbehindtheface coming soon! Photo credit 📸: @lovetruefood - Lakshmi Harilela
About last weekend... HK Rugby Referees Annual Dinner. Rude not to get a pic with 1991 World Cup Final Referee, Derek Bevan 😁 Looking forward to what next season has to offer me! #rugby #awardsdinners #referees #welshiesassemble #hkru #hkrugbyreferee #scrubupgood
I love tops with funky straps. Shame they don’t work well on slightly bustier types. - - It’s taken a while for me to like my own #skin. But i am slowly getting there. There is some kind of #beauty in looking #different. - - #skincondition #harlequinichthyosis #strappybra #strappytop #awareness #beyourself #borndifferent #inspire
I had to remove all traces of official rugby gear for this short trip into the #southstand. It was disgusting. But I’d do it for friends! #wheretheworldcomestoplay #hksevens #removealltraces #worldrugby
Always be the #superman (or #superwoman) - - - Photo credit to @hkphotographystudio. He’s a cool #Canadian - - - #photography #closeup #headshots #smile #survivor #harlequinichthyosis #inspire #ichthyosis #rareskin #raredisease #demmuscles #hkwellness #referee #yogiintraining #hkphotography #sayyes #rugbyreferee
Back out on the water with Sailability. Sometimes I have a free Saturday, so it’s nice to go down and help out!
I’m sure I had more hair when I was younger...now I’ve just been cutting and dying it!
NYD 2017.
So much of the time, we crave to be #validated by others. We yearn to be accepted and liked by people. For example, I still try to hold on to relationships I had in school over 8 years ago. While we are better friends, I can only wish we were closer now. But the group of friends I have now are those I look forward to hopefully spending many many years with. Everything else will just fall into place. Just like this #crowpose. It was a hard pose to do. But as my #yoga mentor once told me during training, I have the actual muscular strength to pull off most advance asanas because of my fitness regime. But it’s all about trusting yourself and having the confidence. And that’s what most of my life is about. Finding the confidence to move ahead. Everything will flow after that.
Many people have asked me about the current situation here in Hong Kong. I will be very honest and say that I am possibly in no position to comment as I haven’t been following the news much because...life. People have asked if I’ve been directly affected. The short answer is no. I have generally avoided protest locations with a vengeance for my own personal safety. I have however been caught in a couple of situations where I have been in very close contact with the protestors to the point I actually leave because I fear them and what they could do to me. It’s a very unpopular opinion, but I have felt safer travelling around HK knowing that the police and transport staff are around. I have a few opinions about what is currently happening, none of which I feel like I can write down here for fear of backlash. DM me if you want to discuss this more. The one thing about this photo is that it was taken in Victoria Park on National day which falls on the 1st October in Hong Kong. My friend and I were in the grassy area away from the protestors. But as we were doing yoga, we heard frequent loud chants and the occasional siren. I felt super uncomfortable but I was okay as I wasn’t alone. HK is generally a safe place. But right now because of the political tensions, I feel safer walking around with a friend. And that’s the truth about living in HK right now. Other than that, business as usual.
25 years ago, my parents heard of me for the first time. 25 years later, we are a family. For the full post, head over to @thegirlbehindtheface ❤️ #adoption #fosterparents #specialneeds
Today was a day I knew would come eventually. A somewhat difficult announcement but you guys should know. A few months ago, I was diagnosed as being high functioning on the #autism spectrum. We publically announced it today after keeping it a private affair. I It was a shock and I’m still trying to get my head around it. Yes I don’t look like I have autism. But it comes in all shapes and forms. I won’t discuss it too much in detail. But I will say that I am working with my parents as well as a fabulous team that is being assembled. The important thing is that I am still Mui. I am still me. And what I need at the moment is support and understanding. We have a longer post about this over on @thegirlbehindtheface. Head over there as well to read our full post. ❤️❤️
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"Coping with people's reactions — that's always quite difficult," she told Inside Edition.

Like the woman who spat on Tina, people assume the worst when they see Mui. They either think she's been burned or is contagious. Sometimes people will scream and run away.

She has also faced difficulty finding doctors who understood and could handle her condition, as well as schools that would accept her.

But Mui isn't letting any of it define her. She fights for normalcy every day, and in addition to being a yoga instructor, she works as a rugby referee and helps children with special needs.

Mui and her parents also started The Girl Behind The Face, an initiative to raise awareness of physical conditions, which also operates as an anti-cyberbullying platform. The family hopes The Girl Behind The Face will open up more conversations about harlequin ichthyosis, and that sharing their story can normalize their experience.

Watch the full Inside Edition interview above to learn more about the Thomas family and Mui's life.

 

 

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