Photo credit: Graham Lucas Commons

Paige’s story is one of quiet strength, honesty, and self-acceptance - reminding us all to look beyond the surface.

I Am Paige

My name is Paige and I am 26 years old. If I had to describe myself in three words it would be: positive, patient, and understanding. I am based in Bedfordshire, and I live with Ichthyosis Bullosa of Siemens (KRT2-nEDD), but my life is defined by far more than just my skin.

I love reading, long walks, catching up with friends, and going to shows and concerts. And something many people wouldn’t expect, I am a special needs and dance teacher, combining care, creativity, and resilience in my everyday work.

More Than Skin Deep

Living with ichthyosis comes with daily challenges that aren’t always visible at first glance. One of the hardest parts for me is self-confidence, constantly seeing skin flaking no matter where you are and not being able to help it.  

But I am not facing it alone. A strong, supportive network that encourages me to do my skin care routine and who are there to pick me up.

What I wish people understood is simple:
Ichthyosis may affect the outside, but it doesn’t change who someone is inside. There are still dreams, feelings, and ambitions - the same as everyone else.

Photo credit: Graham Lucas Commons

Everyday Reactions

People stare, make comments, tell me I have something on me, like to point it out as if I don’t know! 

What many don’t realise is the deeper impact ichthyosis can have, it isn't just bad skin - from reduced mobility and fine motor challenges, it knocks self confidence and effects daily life.

Strength in Identity

Through my journey, I have learnt to embrace my individuality. I recognise that people will be unkind no matter what and I can't change that, so instead I choose to promote and embrace who I am.

A turning point in my journey, was realising ultimately I am the person that has control over the impact ichthyosis has on my life. No one else. 

One of my biggest sources of strength has been meeting others who share the condition via the Ichthyosis Support Group - a no judgement safe space, where it feels everyone has a weight lifted off their shoulders.

A Message That Matters

The first thing I did when I saw my photos was to look for the bad skin patches.

My message to anyone newly diagnosed:

And For Healthcare Professionals, A Reminder:

That we are people, think about how we feel when you ask to look at our skin.  

Photo credit: Graham Lucas Commons

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