What is XP - or xeroderma pigmentosum?

Last updated at 06:13
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My Life: Into The Sun - Alice explains what it's like living with XP

On Monday, a special episode of My Life will tell the story of Alice, 13, who lives with a rare genetic condition called xeroderma pigmentosum - or XP for short.

This means that she cannot go out in direct sunlight, so she has to wear a special visor to protect her skin.

Read on to find out more about the condition.

What is XP?

Xeroderma pigmentosum - or XP for short - is an extremely rare genetic disorder, for which there isn't a cure.

It affects fewer than 100 people in the UK.

If a person has XP, it means that the DNA in their bodies' cells cannot repair itself if skin is exposed to ultra-violet (UV) light, which is present in sunlight.

This means that people with XP have to cover up and protect their skin if they go outside during the daytime.

What is life like for Alice?

"XP means I can't go outside without being fully covered up," explains Alice. "I have to wear a special visor when I go outside."

Alice wearing her protective visor.CBBC My Life
Alice has to wear special protection if she wants to go outside during the day

She explains how her mum has been an enormous help by making a special visor for her with a long neck covering to keep her protected.

"If I go outside without my hat through the day, my skin will damage until I get skin cancer. I've had about 5 operations to remove skin cancers."

Alice has a special UV meter which monitors UV levels outside, so that she knows when it is safe for her to remove her visor outside.

"My UV meter measures how much UV light is in the air. It can be pretty frustrating waiting for the Sun to go down. I can hear people outside playing and having fun, and I'm stuck indoors. It gets quite lonely indoors, so I keep myself busy until I can take my hat off."

"Even when it's almost dark, it's never fully safe until all the UV has disappeared."

Alice's UV monitor.CBBC My Life
Alice has a special monitor which tells her when the levels of UV light outside are at 0 and then she can take off her visor

In the programme, Alice becomes friends with Thapelo who lives in South Africa, and the two girls go on an amazing journey together.

"The XP is just a part of who we are," says Alice. "I think people should look at it in a way of it being something unique about the person [who has XP]."

"Even if we do have a condition, it's not going to stop us doing what we want to do. I'm not going to hide away anymore. Sunlight may not be our best friend, but our best friends can be the light that gets us through the darkness and into the Sun."

You can watch My Life: In The Sun on CBBC on Monday 25 March at 5:30pm.

Comments

  • View all (2)
  • Comment number 2. Posted by cupcakerainbowcat

    25 Mar 2019 17:40
    stay strong
  • Comment number 1. Posted by Blue_Porpoise

    25 Mar 2019 17:30
    Poor Alice and Thapelo. I would hate to have their condition. They seem really nice though.