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Max

By Member stories

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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Mai

By Member stories

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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Lesley

By Member stories

My name is Lesley and I was born in 1978 and live in Blairgowrie, Scotland. I was diagnosed with ichthyosis at birth and have Ichthyosis vulgaris (IV). My hands and feet are very dry and…

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Kevin

By Member stories

I have just been diagnosed as having Ichythyosis X-Linked in the last few weeks. I am 46 years old man and have suffered since birth on my legs, arms and trunk; the worst by far…

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Joanna and Charlie

By Case studies

Case studies

Joanna and Charlie

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Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

A guide to the new ichthyosis and palmoplantar keratoderma naming system – Epidermal Differentiation Disorders (EDDs) This article explains the recent changes in how we name…

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Helen

By Member stories

I am now 51 years old….just. I have had ichthyosis all my life. It is part of me and I live with it. It makes me unique. Sometimes it frightens me, because I and others…

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