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What is xeroderma pigmentosum?

Treatment and Support

Unfortunately, options for treatment of XP are few and far between. There is no known cure for the condition. The genetic nature of the disease affects the body's ability to repair DNA damaged by ultraviolet radiation. Until there's a breakthrough in genetic treatments, a person with XP has few options other than to limit exposure to ultraviolet radiation as much as possible.

Many people who suffer XP must seek out cancer treatments later on in life. Some endure multiple surgical procedures to remove cancerous growths from their skin and eyes. Diagnosis of the condition early is paramount to limiting damage as much as possible. Since even brief exposure can lead to blisters and skin cancer, discovering the condition before the child has experienced too much UV exposure is critical.

Those affected by XP must try to avoid ultraviolet radiation in all its forms. Parents with children who have XP will need to keep the children indoors during daylight hours. Untreated windows may let in ultraviolet radiation and must be covered, too. Some parents go a step further and will apply sunscreen to children multiple times a day while minimizing the chance for sunlight to get inside. Children with XP develop skin cancers at a rate 1,000 times higher than the average population [source: Diwan].

Parents will also need to monitor the lighting conditions of their homes as well as any destination the child may visit. Incandescent bulbs don't emit much ultraviolet radiation. Fluorescent bulbs can emit more. If the radiation is intense enough, someone suffering from XP could experience symptoms upon exposure.

Regular visits to a dermatologist are important. People with XP must have their skin checked for signs of growths every three to six months. Because so many people with XP also develop eye problems, regular visits to an ophthalmologist are a good idea too. Neurological examinations may also be necessary.

Living with XP can be an isolating and frustrating experience. Parents have little hope of providing their kids with a typical childhood. Normal schools and activities simply aren't an option. Yet through extraordinary efforts, parents can provide children with XP the education and social activities they need.

While we have no cure for XP yet, doctors, scientists and support groups are determined to continue research into the condition to find ways to treat and defeat the disease. In the meantime, people with XP will have to continue to avoid sunlight and other forms of ultraviolet radiation.

For more on XP and other skin conditions, take a look at the links on the next page.