Managing XP

Xeroderma pigmentosum (XP) is condition where the body cannot repair skin damage caused by ultraviolet radiation (UVR) from sunlight.

Although there is no cure for XP, there are ways to manage the condition. The most important thing is to protect your skin from UVR.

UVR can be found in all types of daylight, even in cloudy or rainy weather and the shade. It can pass through some windows. Some types of light bulb produce UVR.

You can measure the UVR in your environment using a UV meter.

It's important to take steps to protect yourself and understand your condition. This can help you to find and get help for any problems early.

Plan your day

Unless you are protected with suitable clothes or sunscreen, you need to stay away from all sources of UVR wherever possible. Completely protecting your skin from UVR can reduce skin damage.

The risk of UVR exposure is higher in the summer and in the middle of the day. Try to plan your day, so you can avoid being exposed to UVR as much as possible. 

You can also plan your travel, so that you spend less time outside. 

Choose protective clothes

You can protect yourself from UVR by wearing protective clothes. Examples are:

• hats or caps that shade your head, face and neck as much as possible
• full-face visors (protective coverings) or wrap-around sunglasses (a CE mark or UV 400 sign on the label shows that the sunglasses meet safety standards) 
• long-sleeved tops
• full length trousers
• gloves

Long hairstyles can help to protect your ears and the back of your neck.

Some people wear 2 layers of clothes to block their skin from UVR.

Closely woven materials are more effective at reducing UVR exposure. To check how close the weave of material is, hold it up to the light. The less light passing through the material, the better it protects you. 

Some clothes are made from UV protective factor (UPF) treated materials. Closely woven materials can be just as effective and are often cheaper. 

Wear sunscreen

It is important to put sunscreen on all areas of your body exposed to UVR. Make sure that you do not miss anywhere.

You need to put on sunscreen 20 to 30 minutes before you are exposed to any UVR. After this, you need to put on sunscreen again every 2 to 3 hours. 

If you wear make-up, put on the sunscreen before your make-up.

Here are some guidelines for choosing a sunscreen:

• For your skin, use a sunscreen with a high (50+) sun protection factor (SPF) and a high UVA rating.  
• For your lips, use sunscreen or lip screen with a high SPF.

Sunscreen should form a film when you first put it on. This shows that you have used enough.

It's a good idea to keep supplies of sunscreen in different places. You can then always have some available when you need it.

There are different types of sunscreen, such as creams, lotions, sprays and roll-ons. Some are available on prescription. Your nurse can help you to choose a sunscreen and show you examples of products that are available.

Change your environment

UVR can pass through some window glass. Some types of light bulb also produce it.

Your XP clinical nurse specialist (CNS) can visit you at home, school, college, university or in your workplace. They can check the UVR risk by using a UV meter.

UV meters are free for people diagnosed with XP. 

Windows

A UVR protective window film can be put onto windows. This is clear and does not affect the light in the room. 

Some window glass has a UVR filter built into it. To find out if there is a filter, contact the manufacturer or test the window with a UV meter.

You can apply for a Disabled Facilities Grant from your local council. This sometimes covers the cost of a protective window film. Action for XP might also be able to help with funding. 

Closing curtains or blinds on unprotected windows reduces UVR levels. Open windows let in more UVR, so keep them closed as much as possible.

Light bulbs

Some light bulbs produce UVR. In general, the further away you are from the bulb, the lower the risk. You can also greatly reduce the risk by putting a protective cover over the bulbs. 

Work, school, college or university

It's best to tell your employer or teachers that you have XP. You can then give them some basic information about your condition. 

Your employer or teachers might be able to help reduce UVR in your environment and structure the day to suit your needs. 

Your XP CNS can give you advice and support. They can also visit your place of work or study to check if it is safe from UVR. 

Read information on starting school with XP. 

Holidays

You can still go on holidays with XP, but planning is important.

• Choose a place or time of year for your holiday that helps to reduce the risk. 
• Pack enough protective clothes and sunscreen. 
• If you're going abroad, take a copy of a recent clinic letter in case you have any medical problems. 
• Tell your holiday insurance company about your XP diagnosis.

Understand your condition and get help for concerns

It's important to understand your condition well. This can help you to find any possible problems early. 

Look at your skin for signs of any skin growths or spots. You might need a family member to check any areas that you cannot see. 

You need to report any concerns about your skin immediately to your local skin specialist (dermatologist) or the XP team.

Be aware of any possible eye problems. If you have any concerns about your eyes, contact your local optician or the XP team.

Stop smoking

Smoking can increase the chances of cancer for anyone with XP. We strongly recommend that you do not smoke. 

For help to stop smoking, you can:

• speak to your nurse
• visit the NHS website for help and advice
• contact our stop smoking service