Photo credit: Graham Lucas Commons

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.

I am Daniel, and I am from Nottingham. I live with Epidermolytic ichthyosis.

If I had to describe myself, I’d say I’m funny, fidgety, and annoying. I love gaming - especially Mario Kart, chatting with friends, and going out with them whenever I can.

Something people might not expect about me? I eat around 2,500 calories a day and still stay skinny.

My Daily Routine

One of the biggest challenges for me is something I have to do every single day: creaming my skin. It’s constant. Alongside that, moisturising and soaking help keep my skin as manageable as possible. It might look simple from the outside - but it takes time, effort, and consistency.

More Than People Think

One of the biggest misunderstandings is that ichthyosis is contagious - it’s not. And even when people do understand a bit more, they don’t always realise how constant and demanding it is, because we get used to managing it and make it look easier than it is.

From the Beginning

From my mum:

When Daniel was first diagnosed, it was an incredibly difficult time. We were initially told it could be epidermolysis bullosa - something life-limiting and very painful - then later told it might be scalded skin syndrome, which would pass.

We felt like we were caught between life and death, waiting for answers. It was overwhelming beyond words, especially while also caring for a toddler. Getting through that period was one of the hardest things we’ve ever faced.

Photo credit: Graham Lucas Commons

Finding What Works

From my mum:

What has really helped Daniel thrive is something simple but effective: spa soaking.

It makes removing excess skin more comfortable and even brings some enjoyment into the routine - turning something difficult into something more manageable.

Strength and Support

Daniel: My biggest support is my parents.

From my parents: For us, it’s been each other - and having the confidence to sometimes trust our instincts, even when that means doing things differently from what we’ve been advised.

Living with ichthyosis has shown us just how hard it can be to be even slightly different in the world.

A Message From Me:

If you look at my photo, I want you to know: It can be really difficult.

And if you’re newly diagnosed:

Our Message to Healthcare Professionals:

When someone's baby is born, be sure before you diagnose someone with a life sentence, and later in their child's life, parents know their child best. You ask us what we need and want, then make us feel inadequate for the choices we make.

Photo credit: Graham Lucas Commons

Photos from the Faces of Ichthyosis photoshoot, kindly funded by the British Association of Dermatologists.