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Member stories

Mai

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Updated May 2023 Ichthyosis Awareness Month: Some thoughts Recently I read an article that I wrote on the blog of Ichthyosis Support Group ten years ago. It was the time when I was thinking a…

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Max

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Our son was born 2 years ago with harlequin ichthyosis. We were told he would not live, we were shocked, devastated, free falling with fear, desperation, confusion. We had an exceptionally fantastic NICU team who…

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Amber

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My name is Amber Brine and I live in Townsville, Queensland, Australia. I was born with Netherton Syndrome which is a form of ichthyosis. Ichthyosis is an extremely rare and incurable condition currently affecting only…

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