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By CNA Published: 24 Nov 2019 Audio: English
Harlequin Ichthyosis is a rare genetic disorder that causes thick and scaly skin that is prone to cracking and constant infections. In the past, babies born with this condition rarely live beyond the first few days. Today, sufferers are able to lead normal and productive lives - but not without obstacles. From 2-hour long oil baths and constant moisturising, to stares and judgement from strangers, their struggles are physical, social and emotional. Enter the lives of four individuals coping with Harlequin Ichthyosis in Singapore, Hong Kong and Vietnam. Three-year-old Zoe may have lost all her fingers due to the condition, but she's not lost her joy for life. Despite being visibly different, 13-year-old Aliya navigates the teenage years with grace. Two-year-old Ngoc Bich is an orphan in Vietnam, waiting for a family to adopt her. And 26-year-old Mui Thomas' achievements are proof that a fulfilling life is possible even with a lifelong condition.
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