New Support XP information
In the United States, more than 3.5 million cases of basal and squamous cell carcinoma are diagnosed each year according to the American Cancer Society. Additionally in 2015, it is estimated that one in 50 Americans will develop melanoma skin cancer in their lifetime. On average, this means one American dies from melanoma every hour and another 6,230 estimated deaths from skin cancers other than melanoma will occur in the United States in 2015.
However, the plight of skin cancer is taken to an entirely different level with a person who has XERODERMA PIGMENTOSUM or XP. This rare genetic disease causes a person to be extremely sensitive to the damaging effects UV light (i.e. sun light, black lights, halogen lights, etc.). Their bodies simply can’t repair the damage caused by UV light as a healthy bodies do every day. Therefore, undiagnosed and untreated, XP can lead to the early onset of skin cancer and blindness. While an average person might not worry about skin cancer until their 40’s or 50’s. An XP patient may be diagnosed with skin cancer the very first year of life. An XP patient’s skin cancer is not any different from the population at large; it just occurs at an exponentially faster rate since their bodies have no way to protect or repair themselves from UV damage. In addition to the photosensitivity, approximately 20% of people with XP also develop progressive neurological disease.
XP Family Support Group is a 501(C)3 non-profit organization dedicated to improving the quality of life of those affected with Xeroderma Pigmentosum through education and support services, researching effective treatments, and ultimately finding a cure.
THE CURE AND TREATMENTS FOR SKIN CANCER OF XP PATIENTS ARE THE SAME CURE AND TREATMENTS NEEDED FOR EVERYONE.
XP Family Support Group encompasses
- For each newly diagnosed XP patient, XPFSG provides a light meter, UV protective plastic, sunscreen/chap stick, UV protective gloves, initial educational material, and emotional support.
- Facilitates protective filming of car, home, and school windows to allow for safe and free movement for XP patients while in their indoor environments
- Educates families on how to provide normalcy within a UV safe environment. Our kids play soccer, ride bikes and horses, surf, ski and know how to be safe at all times!
- Educates families on proper use of IEP plans in order to obtain the support needed from their school districts.
- Holds a bi-annual medical conference to connect XP families with one another, facilitate the sharing of knowledge between doctors/researchers to families, as well as doctors to doctors.
- Provides international support to XP patients in various third world countries. XPFSG has funded multiple medical teams allowing them provide needed treatments and surgeries for these XP patients who would otherwise go without.
- Promotes medical research by providing the necessary biopsies to supply researchers with a library of different samples needed for their specific research.
- Funds medical research in order to obtain treatments and ultimately a cure for both XP patients and all those suffering from skin cancer.
- Member of the Coalition of Skin Disease – an alliance of numerous nonprofit organizations who advocate on behalf of individuals with skin disease. As a member, XPFSG works closely with affiliate organizations like the American Academy of Dermatology, the Dermatology Nurses Association, and the Society of Investigative Dermatology.