Photo credit: Graham Lucas Commons

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.

I Am Nelly

I’m Nelly, I’m 42 years old, and I’m from Coventry. I live with Harlequin ichthyosis.

If I had to describe myself, I’d say I’m bubbly, lively, and positive. I love shopping, going to the cinema, and spending time with family and friends.

What people might not expect is how independent I am. I go out on my own and work in a primary school as a play assistant - something I’m really proud of.

My Daily Reality

Some of my daily challenges aren’t always obvious. Simple things like opening jars, cans, or even my tubs of ointment can be difficult.

What really helps me manage is support from my niece. She helps with skincare, reaching places I can’t, and everyday tasks like doing up buttons and tying shoelaces - those little things that make a big difference.

More Than What You See

One of the biggest misunderstandings about ichthyosis, and what people need to know is that it’s not just physical. It’s also about how it affects me psychologically - how I feel in myself, which can change from day to day.

People can sometimes be wary of approaching me, and that can be hard. But there’s always more going on beneath the surface than people realise, and I notice they are cautious, even speaking about me in a dialect they think I don't understand, when actually I do!

Photo credit: Graham Lucas Commons

Strength and Support

Living with ichthyosis has taught me to be resilient, take each day as it comes, and live life to the fullest.

My biggest support has been my family, friends, and the Ichthyosis Support Group - people who understand and are always there when I need them.

Finding My Independence

A real turning point in my journey was travel training, which helped me learn how to get around independently. That independence has given me confidence and freedom - and shown me what I’m capable of.

A Message From Me

If you take one thing from my photo, let it be this: Don’t judge a book by its cover - I have not been in a fire!

And if you’re newly diagnosed:

My Message to Healthcare Professionals:

Ask me about my ichthyosis - because understanding me goes beyond what you read in notes or online.

Photo credit: Graham Lucas Commons

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