It's everyone's nightmare to be diagnosed with a disease. But imagine being diagnosed with a rare disease, one for which there is no proven cure or little medical research about. Imagine the person afflicted with this disease is a child. This is just the situation two families are dealing with, one in New York, the other in Kentucky. The two families' response under such circumstances has been inspiring.
When Caren and Dan Mahar of New York learned their daughter Katie had been afflicted with xeroderma pigmentosum, they didn't know where to turn. Individuals with XP must avoid the sun and bright lights because their bodies do not have the ability to repair skin exposed to ultraviolet rays. So what would be normal exposure to sunlight for anyone else can be catastrophic for a person with XP. The odds of an XP patient getting cancer are great if exposed to ultraviolet light. They must therefore adjust their lifestyle to this condition by staying indoors during daylight hours. While indoors, special window shades and low-wattage lights are necessary for XP sufferers. At least 150 people in the United States and 3,000 people worldwide are afflicted with this disease. There is no known cure.
In 1995, the Mahars founded the XP Society to help patients and families dealing with the disease. The society supports medical research for finding a cure as well as providing information to XP patients. The biggest single act of the XP Society is its Camp Sundown, where patients and their families gather twice a year. The hours of the camp are structured so all activities take place at night when it is safe for XP patients to be outside. Without a dime of federal funding, the XP Society has waged a sustained, organized campaign of information and support for XP sufferers.
Members of the Hollywood community are also active in supporting the XP Society. Actress and director Kimberly Williams-Paisley produced an award winning short film about the disease titled Shade. The XP Society is helping distribute copies of the film to increase public awareness about the disease. Such awareness is crucial to support research into rare conditions such as XP. So little is known about such diseases that attracting the public's attention to raise funds for research is very difficult. It is more likely that an individual will give money to support research into more common illnesses such as heart disease or AIDS.
Article comments
1 - Matt Paprocki
How would a parent even know if their kid had xeroderma pigmentosum? Wouldn't one exposure as an infant be disaster?