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  1. Blog

Member stories

These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.

Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.

We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.

Meet our Members

 

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Latest

  • Faces of Ichthyosis: Anna

    Faces of Ichthyosis: Anna

    Anna’s story highlights the resilience needed to live with ichthyosis and the daily reality of managing her skin. She hopes people will look beyond appearances and better understand the condition.

  • Faces of Ichthyosis: Daniel

    Faces of Ichthyosis: Daniel

    Daniel’s story is one of courage, honesty, and self-belief - showing that even in the face of misunderstanding, you can still choose to live life your own way.

  • Faces of Ichthyosis: Nelly

    Faces of Ichthyosis: Nelly

    Nelly’s story is one of independence, honesty, and positivity - showing that with determination and support, life can be lived fully and on your own terms.

  • Faces of Ichthyosis: Daniel

    Faces of Ichthyosis: Daniel

    Daniel’s story is one of honesty, resilience, and adaptability - showing that even when something is constant and challenging, it’s still possible to find ways to cope, connect, and keep going.

Most read

  • Treatments Used in Ichthyosis

  • Palmoplantar Keratoderma (PPK)

  • X-linked Ichthyosis

  • Vitamin D

    Vitamin D

    Vitamin D is a vitamin which is essential for our health and well-being. Individuals with ichthyosis, in particular ARCI, including CIE/lamellar/harlequin ichthyosis, and epidermolytic ichthyosis, are at risk of Vitamin D deficiency.

  • Harlequin Ichthyosis

  • Inheritance of Ichthyosis Factsheet

  • Ichthyosis Overview

  • Eye Management in Ichthyosis

  • Udrate Cream

    We have received information about a new product similar to the discontinued Calmurid, and the following is for your information and guidance.

  • New product - Udrate

    New product - Udrate

    Following the discontinuation of Calmurid, Udrate is the new product available containing Urea and Lactic acid.

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

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

This article explains the recent changes in how we name some inherited skin conditions. This includes conditions like the ichthyoses and palmoplantar keratodermas. Read more

Published: 3rd September, 2025

Updated: 4th October, 2025

Author: Mandy Aldwin

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