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Teenager Suffering From Rare Harlequin Syndrome

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Published on Jul 23, 2013

Teenager Suffering From Rare Harlequin Syndrome

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When people first meet teenager Hunter Steinitz, many believe she's been the victim of a fire. In fact, her appearance is because of a rare genetic condition, Harlequin Ichthyosis, which means her skin is too thick and causes dry patches all over the body. Hunter, 18, can't shut her eyes, wears a wig because her hair follicles are blocked by skin, and is in constant danger of dehydrating. She cannot sweat, so needs to be constantly aware of overheating during high summer temperatures. The condition also limits her movements, and the thick skin even stops her from flexing her fingers. Hunter begins every day with a long beauty session, taking a long bath lasting up to two hours, to soak as much moisture as possible, then applying lotions and oils, which she has to reapplying throughout the day. For many years Hunter was bullied at school but her parents taught her to educate people and she would go from class to class telling pupils about Harlequin and that it was not contagious. In the past, many babies with Harlequin died in infancy, but thanks to better preventative measures young people like Hunter are living longer lives and now she is due to start university in September. She is also giving inspirational talks to other students and children to educate people about her condition, working with the charity The FIRST foundation.

Videographer / Director: Brett McGinnis
Producer: Liam Miller
Editor: Ian Phillips

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