MUI THOMAS: Even though it’s difficult, sometimes living with ichthyosis and going out, I can always count on the support of a lot of people around me. Acceptance is such a big thing, and for me to you know, not to have to explain myself all the time. And it is nice just to hang out with people and just be normal, have fun. MUI THOMAS: I get cold a lot more quickly and I get hot a lot more quickly. I don’t sweat, my sweat glands are not as well developed as ordinary people. I have to be really careful about being in the sun for too long, otherwise I could get really high temperatures at night. I normally try to stay as hydrated as I possibly can. My skin condition, Harlequin Ichthyosis is a very rare genetic skin disorder, it only affects a small number of people in the world and I am one of the oldest survivors with it at the moment. MUI THOMAS: I always carry cream in my bag because it’s important for me to remain moisturised. So, you know, whenever I feel dry or every so often, I just take the tub out and I will just put some cream on and then I am good to go. When I was born, my birth parents signed me off and I was in a hospital and my parents met me as volunteers when I was one and a half years old. TINA THOMAS: She just basically walked into our lives, she came into the room. I just could see this spirit, I could see she wanted to have fun, she wanted to get on with it. And well I just couldn’t walk away and say well you don’t deserve a chance and well that’s where it started. ROG THOMAS: Having a visible difference, the psychological challenges of that have a huge role to play. MUI THOMAS: One of my biggest challenges is going out, sometimes people will often stare and point at me. It’s really horrible because I just want to go out and live my life and be normal, but it doesn’t work when people shout and scream at me. My experiences in high school were really difficult: fitting in and also cyber bullying. I think for me my biggest struggle was not having really any friends. I think that the cyber bullying broke me, and I wanted to actually kill myself. I wrote a suicide note and I gave it to my mom. I just thought nobody wanted me around. TINA THOMAS: I felt absolutely devastated. I thought gosh, after all Mui had gone through, after all she had survived and we were such a unit. It was so devastating to see that Mui now, the spirit was completely broken and she wanted to give up and it took a long time to build her up that she felt halfway good again to go out there and face people. She always wants to get on with life; she wants to get out there. She’s a survivor, not just in the way of health wise, but she’s also a survivor getting up there and going on with life. MUI THOMAS: Now growing up as an adult, I definitely have one or two close friends and you know we get on really well. And they accept me for who I am and it is nice just to hang out with people and just be normal, have fun. My parents and I set up a Facebook page called ‘The Girl Behind the Face’. We wanted to raise awareness for people with visible differences and people who struggle in society. We’ve been going with it now since 2015 and hopefully as time goes on, we’ll be able to get a book out. MUI THOMAS: I spoke out about it and so many people around the world reached out with support and so it made things a lot easier to deal with. TINA THOMAS: Discrimination with regard to a visible difference is huge but it’s rarely discussed or highlighted, especially in the media. And so we hope that by having a platform that we will be able to raise awareness about the challenges somebody faces with living with a visible difference, but also raising a child with a visible difference. Parents are sometimes forgotten in terms of what they have to go through. MUI THOMAS: So, we are going over from one side of Hong Kong to the other side of Hong Kong. We are going to be at the Hong Kong football club. I am on my way to the under twelve finals, I am a little bit nervous. I’m the only referee in the world with Harlequin Ichthyosis. It makes me feel kind of good and it kind of makes me feel like I can empower others. I am here to show others that you can do whatever you want, you know, as long as you have the mind for it. PETER HUDSON: Today we are at the mini rugby festival at the Hong-Kong football club, the final one for the season. You know, she is progressing well, and we are really proud to have her here with us and it’s just great, great to work with them. PETER HUDSON: Refereeing is not for everybody and you know, to have the courage to do that with, with all the other challenges is certainly inspirational, yeah. ROG THOMAS: She doesn’t want to be held back by having a disorder. Just because you look different doesn’t mean you are a lesser person. MUI THOMAS: My hopes for the future is for me to, you know, just become a stronger person to hopefully reach a wider audience with what I do, you know, with advocacy and just simply living my daily life. So, I think for me it’s just, you know, looking to the future. MUI THOMAS: Meet people, make connections, have a really strong support network and also just be open. And if you are struggling it’s okay to speak out and smile, smiling helps a lot.