Living with XP
Information from the XP Clinic
The XP nurse specialists at St Thomas Hospital have put together an excellent source of information, which includes leaflets about using a UV meter, correct levels of vitamin D, information to give to schools and employment and benefit advice. See http://www.guysandstthomas.nhs.uk/our-services/dermatology/specialties/xeroderma-pigmentosum/patients/patient-leaflets.aspx
An online community page has been set up by the Clinic for patients around the worls, with the aim of giving patients the chance to make contact directly with each other, as well as post questions and share solutions. Visit healthunlocked.com/xp-uk
Information from patient experiences
The information below has been put together by people living with XP and is intended only as a guide. It will be regularly updated – if anyone has any other tips that we could add to our list they would be most welcome. Simply email Family@xpsupportgroup.org.uk
How to protect from UV light
The most important tool for a person with XP is the UV meter, as it can be used to check indoor lighting and light coming through windows everywhere they go. Readings can vary depending on time of year (how strong the UV is) and whether it is a sunny or cloudy day.
UV blocking film
The windows of cars/home/nursery/school/workplace can be fitted with UV protective film. Offcuts of this film can be useful to take if using a hire car or as a temporary measure in a holiday cottage for example. The supplier of this UV blocking film (called DermaGard) is Bonwycke www.bonwycke.com
Lightbulbs need to be checked for the level of UV they emit. LED lightbulbs are the safest.
Factor 50+ suncream and lip protector is vital and needs to be reapplied every 2-3 hours. There are a wide variety on the market and some are available on prescription.
It is recommended that people with XP wear a hat with visor to protect their head, face and neck from exposure to UV rays. These visors are not available to buy but are relatively straightforward to make using a legionnaires hat with either stick and sew Velcro or press studs and UV film that is provided free of charge to XP patients by the XP Support Group. Good legionnaires hats are available from a German company called Hyphen – see http://www.my-hyphen.com/ Click here for instructions on making a visor.
A problem often encountered with the visor is that, depending on the temperature, it can steam up. An anti fog spray like the type used for motorbike helmets can help this. One such example is Muc off anti fog spray which is available from Amazon.
It is also possible to have a visor fitted to a bike helmet, either by wearing a balaclava underneath the helmet and fitting the UVfilm to the front of the helmet, or by purchasing a legionnaire cover for a helmet and fitting the film as with a regular visor.
Another way to keep head, neck and face protected is to use UV ski goggles with a combination of buffs/balaclava/hat.
Clothing needs to be thick enough to protect from UV rays, it is easy to check how safe clothing is by taking it outside and putting the UV meter under it. One option is several layers of thin clothing. Some clothing is made from UV protective material, although the UV protection can be reduced with repeated washing. In this case a wash-in sun protection can help. Wash in sun protection called Ritgard available on Amazon. A good supplier of good quality UV protective clothing is http://www.my-hyphen.com/
Good gloves are essential, again Hyphen do very good ones for adults and children. Pull on scarves by Buff are good to protect the neck in summer. They are lightweight and come in lots of different patterns and are available from Amazon
Information about the XP Clinic at St Thomas Hospital
The NHS funded XP Multi-Disciplinary clinic was established in April 2010 to assist consultants in caring for their Xeroderma Pigmentosum (XP) patients. It provides Photodermatology, Dermatological Surgery, Neurology, Ophthalmology, Psychotherapy and Genetics. It is based at St Thomas’ Hospital in London and diagnostic tests are led by Professor Alan Lehmann from the University of Sussex. The Service has two Clinical Nurse Specialist who provide outreach services for adults and children, visiting patients at their home, school and workplace. The XP Support Group is an integral part of the service giving feedback on the patient experience of the Service and also by providing financial assistance for patients to attend the clinic.
For further information visit hospital website http://www.guysandstthomas.nhs.uk/our-services/dermatology/specialties/xeroderma-pigmentosum/overview.aspx