Photo credit: Graham Lucas Commons

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. 

I Am Anna

I Am Anna, I’m 18 years old, and I live in London. I have Epidermolytic ichthyosis.

I would describe myself as resilient, kind, and caring. I love listening to music, reading, and spending time with friends and family.

Something people might not expect about me is that despite living with ichthyosis, I love meeting new people and trying new experiences.

Living With Ichthyosis

One of the biggest daily challenges for me is how time-consuming and tiring managing my skin can be. Keeping my skin moisturised and comfortable throughout the day takes constant care and attention.

What helps me most is having a consistent skincare routine and supportive people around me.

People often misunderstand ichthyosis. When I was younger, some people assumed it was contagious or thought it was “just dry skin.” In reality, it can affect confidence, comfort, and everyday life in ways many people do not see.

From the Beginning

From Anna’s Mum:

Anna was diagnosed shortly after birth. At the time, her ichthyosis was very severe, and many doctors had never seen a baby covered in such a thick layer of skin before.

Those early days were incredibly challenging as parents, trying to understand and manage a condition that felt unfamiliar to so many around them.

Photo credit: Graham Lucas Commons

Finding What Helps

From Anna’s Mum:

Regular use of emollients, bath oils, and dressings for wounds has made a significant difference in helping manage Anna’s skin and keeping her comfortable.

Experiences With Others

People often stare at my skin out of curiosity, and I am sometimes asked whether I have been burned.

I wish people understood just how difficult daily life can be for someone living with ichthyosis.

Strength and Support

Living with ichthyosis has taught me patience, resilience, and empathy.

My biggest support has been my family, alongside encouragement from people who truly understand the condition - especially the support I’ve received from the Ichthyosis Support Group (ISG).

A Message From Me

If someone looks at my photo, I want them to know: Please look beyond the skin and see the person.

And if you’re newly diagnosed, my message is:

My Message to Healthcare Professionals:

I would like healthcare professionals to understand that Ichthyosis affects not only the skin, but also emotional wellbeing and everyday life.

Photo credit: Graham Lucas Commons

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