The following ideas were gathered from persons living with XP and their families or caregivers.
- Never stop practicing UV avoidance and always plan protection from light sources if you have XP.
- Do not guess. Use a solar meter. Keep the solar meter with you at all times because it will measure the level of concentration of UV rays in any environment. A safe environment in the morning might not be safe in the afternoon or vice versa. The sun is constantly moving; therefore, the situation can change rapidly from safe to unsafe depending on the angle of the sun.
- The best reading level on a meter is 0. Ask your doctor for advice to know the safe level for you tolerate. The Solarmeter Model 5.7 UVA +B Sensitive is 100 times more effective than the Solarmeter Model 5.0 UVA + UVB. Purchase from Solartech, Inc. www.solarmeter.com
- Sunblock with the active physical ingredients of zinc oxide and titanium dioxide are often suggested for safety. Consult with your dermatologist about specific names and brands of sunblock. Regulations vary among countries; therefore, consider importing sunblock products from outside the USA for the best protection from the sun. Routinely use sunblock (even inside buildings) to protect against sources of ultraviolet light.
- The ordinary glass in windows does not to block the UVB rays and UVA waves from sunlight. Sunburns are possible through windows of buildings and cars. Window shielding proven to block UVA and UVB is essential. The objective is to reduce the amount of ultraviolet rays passing through the glass. Some protective screens also reduce visible light and heat
- Select low wattage light bulbs.
- Red light may be a safer option because red light does not cause DNA damage. Consider red or orange LED night-lights.
- Sunblock with active ingredients of zinc oxide and titanium dioxide are often suggested for safety. Consult with your dermatologist about specific names and brands of sunblock. Regulations vary among countries; therefore, consider importing sunblock products for the best protection from the sun. Routinely use sunblock (even inside the house) to protect against sources of ultraviolet light.
- Don’t smoke and avoid being exposed to the smoke of cigarettes.
Avoid ingesting additives when cooking. Avoid browning food. Be aware of the EPA list of potential carcinogens (agents that cause cancer).
- Get a medical bracelet by subscribing to The Medical Alert Service. This service allows doctors and emergency teams twenty-four-hour-a-day contact to obtain all vital information including physician phone numbers and family member/ emergency contact phone numbers. To subscribe visit: www.medicalert.org or phone (888) 633-4298.
- Ask your doctor to check the amount of beta-carotene and the level of Vitamin D through appropriate blood testing.
- Ask if vitamin supplements are recommended to maintain normal levels. A multivitamin or vitamin D can be taken as a precaution in case vitamin D levels are low due to sun avoidance.
- Ask a physician to prescribe all necessary precautions including tinted windows, sunblock, protective gear, and a UV meter. Request a letter with your medical diagnosis. Keep all receipts from purchase of sunglasses, specialized clothing with UPF, and other items. These expenses may be tax-deductible. Depending on your medical insurance, most or all expenses may be reimbursed.
- Persons with the diagnosis of XP should have the skin examined every 3 to 6 months, or sooner if a change is noticed. Have a vision examination and a neurological exam yearly. Ask for routine examinations in the evening when it is dark if the office location is not UV safe or travel is difficult.
- Choose sunglasses that claim total protection against ultraviolet light on the label. Glasses with shields around both sides protect the eyelids and skin around the eyes.
- Long hairstyles can help protect the neck and ears.
- Moisturizers, makeup and lip balms containing sunblocking agents can give protection.
- Always wear long sleeves, long pants (or skirt), and a wide-brim hat when outdoors in daylight. Two layers of clothes protect more than only one layer. Tightly woven material gives more protection against the sunlight than fabrics with loose stitches or weaving. Wear clothing that is not see- through and does not let the light show through. Some companies make lightweight clothing specifically designed to provide a high degree of sun protection. Wear gloves to protect your hands.
- Rit Sunguard in the clothes washer can increase the UPF (light protection factor) of some clothing.
Detergent Rit Sunguard can increase the solar protection factor (SPF). http://sunguardsunprotection.com/faqs/
Some companies make lightweight clothing specifically designed to provide a high degree of sun protection. Sun protective clothing does not give total protection because 100% of the UV rays are not blocked. Many of the clothing items have been tested to provide 50+ UPF or 100+ SPF but although this is good protection it is about 98% protection. Companies selling sun protective clothing include:
- Travel with a portable solar protector for car windows. This protector can be acquired in stores selling auto parts. Use “tinted sheets” for windows on your car, your house, when you fly, or ride in rented automobiles. A letter from your doctor is needed for protective screens or window tint for car windows, if these visibly stop the light. Many states, like New York, have made special exceptions to the laws of vehicle operation in regards to tinted windows to permit the protection of those individuals who are sensitive to ultraviolet rays. Contact your local Department of Motor Vehicles (DMV) office to learn about exceptions in your state.
- Apply for a handicapped-parking permit at your local DMV office to use a parking place close to your destination and to minimize UV exposure during necessary trips during the daylight hours.
- Xeroderma Pigmentosum is listed as a qualifying disability in the United States.
- Do not be reluctant to ask for assistance for people with disabilities. Ask for access to a wheelchair for a very useful method of transporting faster through unsafe-lighted areas.
- Request priority when passing through airport customs or security.
- Contact a hotel before your visit. Investigate the kind of lights used in the guest rooms and bring your own light bulbs if the lights are not safe. Ask about indoor pools and location of restaurants.
- Amusement parks can offer special passes to avoid standing in long lines. Investigate park policies and explain your situation. Do not hesitate to argue your case to obtain what you need. Explain that you are able to attend only at night. Also inform them that the lights in areas where people wait for rides are unsafe for you. Ask for the levels of UV rays on the rides. Avoid black lights and fluorescent lights. Black lights make white clothes glow or shine brightly in darkness because they give off the highest quantity of ultraviolet rays.
- Regular use of baby oil in bath water helps to moisten and soften dry skin at a low cost. Oatmeal baths are effective. Ask for suggestions for soothing remedies at the pharmacy or from your dermatologist.
How To Protect Children With XP
- Children with XP should not play outdoors during the day unless a UV survey has been performed to verify safe levels.
- Special adjustments or arrangements for children with XP should be made in school so that they are not exposed to the light of the sun from an open window or to fluorescent light bulbs without a filter.
- Children with XP cannot be allowed to go to the gym, outside recess, fire drills, or other types of activities that would put them in an unsafe environment.
- Children should be under shelters protected from the ultraviolet light and far from surfaces that reflect light, such as snow, sand, or water. Clouds do not block the passage of harmful ultraviolet rays.
- Organize a variety of activities in such a way that your child who has XP can have plenty of playmates.
- Perform inside activities to keep the child active but only after a UV survey verifies safe UV levels. For examples, karate, gymnastics, and bowling are safe sports for children with XP. They also can participate in music, art, and games of skill.
- Obtain a list of therapists for psychological support for children with this diagnosis. Information may be available from the Department of Health and Human Services in your county or city. Even at its mildest form, XP is a fragile medical condition that requires attention and continual support.