Helpful Tips for the XP Patient
While total avoidance of ultraviolet light sources is the most important practice for the XP patient, the following tips gathered from XP families will help in other areas of day-to-day living. Please feel free to send us more so we will share them. As always, please check with your primary physician before attempting anything new relating to health.
Xeroderma Pigmentosum is listed as a Disability with the US federal listing of disabilities at Social Services. Options are open to families of XP patients for special services.
1. Obtain a handicapped parking permit from your local municipality to secure nearby parking to minimize outdoor UV exposure during a necessary day trip. Many states, like NY, have adapted special exception to their jmotor Vehicle laws regarding window tinting to allow protection of the UV-sensitive individual. Stop into your DMV to find out how to apply for this exception in your state.
2. Obtain the doctor’s diagnosis on his letterhead and make several copies. One copy should always be kept in the glove compartment of your (tinted) vehicle, save one copy for school registration, one to register for summer camp for the first time, and the original should be filed with your other important health papers.
3. Keep those receipts! For sunscreen, sunglasses, specific SPF clothing (like SunPrecautions, Koala Kids, etc.) with all other medical receipts for end of year tax filing. Supported by your doctor’s diagnosis letter, these should be deductible, in conjunction with other medical expenses, as essential for survival. Check with your tax preparer to see if you qualify to itemize. Remember to include other item such as tinting for windows of home and car as they are necessary for the reduction of UV.
4. Check with your county health department or family services about availability of respite care. Xeroderma Pigmentosum, even in its best form, is such a medically fragile condition that it requires continual attention and care.
5. Ask your pediatrician or dermatologist to see if, for routine examinations, house calls can be made. Unless the physician is willing to see you in the office after dark, you minimize risk by having the child examined in your home.
6. Avoid charbroiled (blackened) food items. This has recently been added to the EPA list of known carcinogens.
7. Routine medical examinations
Ask your doctor to check the XP child’s serum carotene (level of beta carotene in the blood) and D vitamin level through appropriate blood screens. Vitamin supplements
may be advised to maintain normal levels.
Skin should be checked every 3_6 months after diagnosis.
Vision and Neurological checks can be done annually.
8. Regular use of baby oil in the bath water can help ap moisture and smoothness to dry skin in a cost-effective manner.
