Skin Deep

Mui Thomas is one of 20 known people worldwide with the same extremely rare skin condition. She discusses the challenges she has encountered and her parents’ forthcoming book, An Unexpected Adoption: The Girl Behind The Face

By Tara Sobti.

Having grown up with a visible difference she didn’t ask for, Mui Thomas could have shunned the spotlight, but instead chose to face it head on and use people’s attention as way to educate others about her extremely rare skin condition, opening frank discussions around mental health and the ups and downs in the life of someone born different. At 29, Mui is one of 20 known people worldwide diagnosed with harlequin ichthyosis, a congenital skin condition which affects an estimated one in every 300,000 births. She is at risk from brittle bones and sun exposure, yet after discovering at school that sport gave her an opportunity “to fit in”, she became the first person with the disorder to qualify as a rugby referee and is a regular fixture on…

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Tatler Hong Kong (Digital) - 1 Issue, April 2022

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