Hong Kong ( CNN ) When she was growing up , Mui Thomas , wanted to be a fashion model -- not an unusual aspiration for a young girl . But Mui suffers from a rare genetic condition that leaves the skin on her face and body red raw and open to infection . `` I really do n't think I knew that I did n't look like everybody else , '' she says . She was born with Harlequin ichthyosis , which means her skin is extremely thick , dry and flaky -- resembling fish scales . She ca n't sweat but she can shed tears . On the day we speak , her appearance raises few eyebrows at her local Starbucks in Sai Kung -- she 's a familiar and well-known presence in the waterfront Hong Kong town where she grew up . Mui 's struggle to come to terms with her condition and other people 's reactions to it has , at times , left her on the brink of suicide . But , now 22 , she refuses to let it get in the way of her life -- she has a full-time job , plays sport and is embarking on a career as public speaker -- educating and inspiring others about the challenges of looking `` visibly different . '' After she was abandoned at birth , long-time Hong Kong expats Tina and Rog Thomas began fostering Mui , when she was just one and a half years old . They were told she did n't have long to live . `` We wanted to give her a family life in the time she had , '' says Tina . However , Mui began to thrive in a loving family environment and Tina and Rog formally adopted Mui when she was three years old . Together they gradually learned how to manage her skin condition . Each day she bathes twice , ideally for two hours each time , and everywhere she goes she carries a backpack with three or four tubs of cream that she must apply throughout the day to stop her skin from drying out . She 's thought to be the fourth oldest person alive with harlequin ichthyosis . The oldest is 31 . But while Mui 's unusual appearance made little difference during her early years , that changed when she started secondary school . The school she attended required that she be accompanied by a educational assistant , which put up a barrier between her and the other children and made it difficult for her to make friends . Things got worse when she became a victim of cyberbullying . She began to deny her appearance , stopped bathing , taking her medication and applying the cream . At times , she considered jumping from the balcony of her home . `` They 'd say things like 'You should n't have been born ' -- and very personal things that only people who knew me would know , '' she says . `` It made me very wary of everybody . Even when people tried to be nice , I did n't repay it . I did n't trust them . '' The worst episode lasted for 10 months and only stopped after police became involved and found the bully -- someone whom Mui thought was her friend . Mui left school with no qualifications . She says the school did n't push her to study and made too many allowances for her skin disorder . `` I still wish I had got a very hard kick up the backside from the teachers when I was n't doing work , '' says Mui . Since leaving school , Mui has found a full-time job working with people with special needs and at weekends can be found running around a rugby pitch with a whistle -- she 's a referee for kids ' matches . Along with her parents , she 's also begun speaking about her experiences of living with a `` visible difference '' and cyberbullying at schools around Hong Kong . Her father has also written a family memoir called `` The Girl Behind the Face . '' Many have found her story inspirational -- a real life version of the young adult novel `` Wonder '' by R.J. Palacio about a young boy with a deformed face who enters middle school . On Saturday , she will graduate from school assemblies and speak in front of a paying audience at a TEDx talk in the city . Her father is both protective and proud . He thinks public speaking will help Mui come to terms with her condition but he 's also wary that she could be portrayed as a `` modern freak show . '' `` 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 says . There 's even talk she might take part in a fashion show for people with visible difference , realizing a childhood dream . In person , Mui comes across as articulate , poised and confident -- something her mom says comes out of spending so much time with adults while growing up -- and it 's easy to see how she could command an audience of hundreds . But after two hours of chatting in a coffee shop , she 's a little bored and keen to get back to her job . She flings her backpack over her shoulder and dashes off into Hong Kong 's crowded streets .
eve Thomas has a rare genetic condition that makes her skin raw and open to infection . while at school , Tina and Rog ##ers adopted twins . She 's now married , a rugby referee and an inspirational speaker .