Living with ichthyosis: X-linked ichthyosis

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Nubah's Charity walk and car wash for the Ichthyosis Support Group

I'm organising this challenge/event to raise money for the Ichthyosis Support Group, a wonderful charity helping individuals and families living with ichthyosis, a rare genetic skin condition. This is the condition that a pupil in our 6th form has.
Faces of Ichthyosis: Paige

Explore Paige's journey with ichthyosis, embracing individuality and strength while overcoming life's challenges.
Faces of Ichthyosis: Elliot

Elliot’s story highlights the resilience needed to live with ichthyosis and the challenges of daily skin care. He hopes people will look beyond his skin and better understand the impact of the condition.
Faces of Ichthyosis: Anthony

Anthony’s story is one of determination, honesty, and quiet strength - showing that ichthyosis may shape daily life, but it doesn’t limit what’s possible.

Georgina and Simon's success with Pre-implantation Genetic Testing (PGT)
Lesley

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).
Anna's story

Anna and is 15 years old. Since birth she has had Epidermolytic ichthyosis (EI), a rare genetic skin disorder affecting less than 1 in 100,000 and has no cure. There are over 28 different types of ichthyosis and they come in many forms, ranging from mildly dry skin to intense scaling, cracked, and thick skin.
Joanna and Charlie

Meet Joanna and Charlie and find out how they navigate life with X-linked ichthyosis
Amanda's story

Amanda talks in depth about living with Epidermolytic ichthyosis.
Living with ichthyosis

3 stories of living with ichthyosis. Talking openly can provide comfort to others, and help raise awareness
Amber

My name is Amber Brine and I live in Townsville, Queensland, Australia. I was born with Netherton Syndrome which is a form of ichthyosis.
A Poem for Rare Disease Day by ISG Member and poet Rachael Boast

ISG Member Rachael, has Congenital Ichthyosiform Erythroderma and is a poet. She has written a Sonnet for Rare Disease Day.
Tell Your Story
Member stories

Here are some personal stories from our members

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