Xeroderma Pigmentosum Health Article

Prognosis

Life expectancy is significantly reduced due to morbidity associated with the cancers. Researchers have not determined how effective preventative measures are, e.g. avoidance of ultraviolet radiation.

In the 1990s scientists discovered a great deal about DNA repair mechanisms, and about the genes associated with xeroderma pigmentosum. The range of symptoms associated with each type have been better defined. The media has also been interested in XP, giving it more attention than is typical for such a rare condition. Advocates in the XP community have developed helpful resources for other affected families, such as Camp Sundown. Hopefully, the first decade of 2000 is leading to new insights, services, and possibly new treatments.

PERIODICALS

Cleaver, James. "Stopping DNA Replication in its Tracks." Science (July 9, 1999): 212.

McPhee, A.T. "Trapped in Darkness." Current Science (September 19, 1997): 10.

Miller, Samantha, and Joseph Tirella. "Into the Night." People Magazine (August 24, 1998): 90.

Williams, Monte. "Little Prisoner of the Light." New York Times (May 14, 1997): B1.

ORGANIZATIONS

National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse. One AMS Circle, Bethesda, MD 20892-3675. (301) 495-4484.

National Cancer Institute. Office of Communications, 31 Center Dr. MSC 2580, Bldg. 1 Room 10A16, Bethesda, MD 20892-2580. (800) 422-6237. <http://www.nci.nih.gov>.

Skin Cancer Foundation. 245 Fifth Ave., Suite 1403, New York, NY 10016. (800) 754-6490. info@skincancer.org.

Task Force on Xeroderma Pigmentosum, American Academy of Dermatology. Box 4014, Schaumburg, IL 60168-4014. (708) 330-0230.

Xeroderma Pigmentosum Registry. New Jersey Medical School, Dept. of Pathology, 185 South Orange Ave., Room C-520, Newark, NJ 07103-2714. (201) 982-4405.

Xeroderma Pigmentosum Society, Inc. PO Box 4759, Poughkeepsie, NY 12602. (518) 851-2612. xps@xps.org. <http://www.xps.org>.

WEBSITES

Horenstein, Marcelo G., and A. Hafeez Diwan. "Xeroderma Pigmentosum." eMedicine Journal 2 (February 5, 2001). <www.emedicine.com/derm/topic462.htm>.

"Understanding Xeroderma Pigmentosum." National Institutes of Health Patient Information Publications. <http://www.cc.nih.gov/ccc/patient_education/pepubs/xeroderma.pdf>.

OTHER

Xeroderma Pigmentosum and Cockayne's Syndrome. Videotape. American Registry of Pathology and Armed Forces Institute of Pathology, 1996. 888-838-1297.

Michelle Queneau Bosworth, MS, CGC