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Faces of Ichthyosis

Every face tells a story, and in ichthyosis, no two stories are the same.

Some may be familiar with how ichthyosis looks, but the daily impact extends far beyond the skin. These portraits and personal reflections offer an insight into the physical, psychological, and social challenges experienced by people living with ichthyosis, helping to support more holistic, patient-centred care, and better understanding from the public.Faces of Ichthyosis is a celebration of real people living with different forms of ichthyosis, across all ages, backgrounds, and walks of life. From children to older adults, from a multitude of cultures and communities, these stories reflect the diversity, strength, and individuality within the ichthyosis community.

We are incredibly grateful to everyone involved in Faces of Ichthyosis for their courage, bravery, and willingness to share their stories to support and inspire others.

Here, you’ll find honest experiences – moments of challenge, resilience, confidence, and joy. These are not just stories about a skin condition; they are stories about identity, belonging, and living fully. By sharing them, we aim to challenge assumptions, raise awareness, and create a space where everyone affected by ichthyosis feels seen and represented.

Because ichthyosis may shape the skin we live in – but it never defines the person.

Faces of Ichthyosis: Ibrahim
Faces of Ichthyosis: Nelly

Faces of Ichthyosis: Ibrahim

Ibrahim’s story is one of confidence, family, and quiet determination – showing that with the right support, children with ichthyosis can thrive in their own way.
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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.
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Faces of Ichthyosis: Anthony
Faces of Ichthyosis: Daniel

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.
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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.
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Faces of Ichthyosis: Elliot
Faces of Ichthyosis: Paige

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.
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Faces of Ichthyosis: Paige

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

Faces of Ichthyosis: Robyn

Robyn’s story is one of joy, resilience, and possibility – proof that with the right support and a lot of determination, children with ichthyosis can live life boldly and without limits.
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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.
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Faces of Ichthyosis: Daniel
Faces of Ichthyosis: Henry

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.
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Faces of Ichthyosis: Henry

Henry’s story is one of persistence, happiness, and small but meaningful victories – showing how much strength can be found in everyday moments.
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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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