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Living with a rare skin disorder | The Skin We Wear | Full Episode

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*This documentary contains images that may be disturbing to some viewers. Viewer discretion is advised.*

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 2hour 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. Threeyearold Zoe may have lost all her hands due to the condition, but she's not lost her joy for life. Despite being visibly different, 13yearold Aliya navigates the teenage years with grace. Twoyearold Ngoc Bich is an orphan in Vietnam, waiting for a family to adopt her. And 26yearold Mui Thomas' achievements are proof that a fulfilling life is possible even with a lifelong condition.

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posted by cronicobarnc