Photo credit: Graham Lucas Commons

Rosemary’s story is raw, direct, and deeply human - reminding us that behind every visible difference is a life just as rich, complex, and worthy of connection as any other.

I Am Rosemary

My name is Rosemary, age 62, from East Sussex, and I live with Netherton Syndrome (SPINK5-sEDD). If I had to describe myself in three words, I’d say: damaged, determined, marmite. I’m someone people tend to either warm to, or not, but there’s always more to me than first impressions.

I love reading, writing, and meeting people. And something you might not expect? I have a brain (well, it works most of the time)!

My Daily Reality

Living with ichthyosis shapes my day in ways most people don’t see. One of my biggest challenges, is getting out of the house in under three hours. Managing my skin is constant, using copious amounts of water and ointments.

What do people misunderstand about ichthyosis? Everything. It often means explaining, again and again, what it is, how it affects me, and why it’s not “just skin.”

Experiences With Others

People usually react by not reacting, they even avoid talking to me. I wish people understood that I am a human being with all the usual feelings. I am a human being, with the same feelings as anyone else.

Photo credit: Graham Lucas Commons

What Life Has Taught Me

Living with ichthyosis has given me a clear view of the world: Most people are kind and good, many are indifferent, and a small number can be ignorant or prejudiced. I’ve learned to see that clearly, and keep going anyway.

My greatest support came from my late mother and my dogs. They’re gone now, but what they gave me still remains.

There's been no turning point - just persistence. There hasn’t been a single defining moment in my life, no turning point. Just life, as it comes, navigated day by day.

What I Want You to Know

If you take one thing from my photos, let it be this: Never, ever judge a book by its cover.

And if you’re newly diagnosed, my advice is honest:

A Final Thought, To Healthcare Professionals, I would say:

We are all individuals. I know it takes time, but take the time to get to know the person, not just the condition.

Photo credit: Graham Lucas Commons

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