Help for XP patients: life in the light is possible
Life-saving face protection film donated for XP patients / RENOLIT produces a tonne of specially developed film for the fourth time
Worms, 4th december 2023 - The family-owned company RENOLIT recently made a donation in kind to the German support group XP-Friends. Xeroderma pigmentosum (XP for short) is an incurable skin disease. The sun's UV rays are life-threatening for XP patients as they cause skin cancer. Around 1,000 people worldwide have XP, most of whom are children. These XP patients must either avoid the sun completely or protect themselves from it entirely. Thanks to the face protection film, they can leave the house again during the day.
Those affected have organised themselves into support groups around the world and now have a good network and various aids that make life with XP easier. XP patients around the world also use the film specially developed for the skin disease on a daily basis. This face protection film blocks UV rays that can cause skin cancer in XP sufferers. This allows those affected to go outside in daylight and take part in life - including going to nursery and school and leisure activities outside the home.
"The film makes it possible to live in the light again. Those affected gain a great deal of quality of life and are reintegrated into society," explains Alexandra Moser, speaker of the German support group XP-Friends.
This is the fourth time that RENOLIT has produced the film specially for XP patients. The support group approached the film manufacturer for the first time in 2008. Back then, the company modified an existing film recipe. This was followed by further productions in 2011 and 2018. RENOLIT manufactures the film in a plant in China. This year, RENOLIT produced seven pallets - resulting in 2,119 discs with a total weight of over one tonne. RENOLIT organises the entire transport from China and bears the costs incurred, as the health insurance companies refuse to cover the costs. Four pallets will be delivered to the support group XP-Friends in Germany and three pallets to the USA. They then distribute the special film to sufferers and other support groups around the world. XP patients in German-speaking countries receive the film either on request by post or at the annual meeting of the support group.
"As a family business, we also have a social responsibility. That's why we are very happy to make our special film available to all XP patients worldwide," says RENOLIT Executive Board Member Sven Behrendt.
Mike Holzemer, initiator of the project and Sales Manager for the Protect Market Unit at RENOLIT, adds: "We receive emails from all over the world. Those affected send us photos with the face protection film and thank us profusely. It's simply wonderful to read and see that we can help people in this way with our film."
About xeroderma pigmentosum
Xeroderma pigmentosum (XP) is a very rare, hereditary skin disease. Due to a genetic defect, a repair mechanism of the skin is faulty. To date, XP cannot be cured. Around 50 to 80 people in German-speaking countries and around 1,000 people worldwide have XP, most of whom are children.
Exposure to UV rays causes pathological changes to the skin of those affected. Even the smallest amounts of UV light are harmful. Affected children develop numerous, mostly malignant skin tumours on sun-exposed areas of the body - especially the face, neck, hands and upper arms - in the first few years of life. In addition to pathological skin changes, XP patients can also develop changes in the eyes, mouth and nervous system.
The disease can currently only be favourably influenced by the consistent avoidance of UV rays and comprehensive sun protection of the skin. Those affected can protect themselves by wearing a cap with a visor made of UV-proof film, gloves and special clothing, window film and sun cream. In some cases, those affected even shift their day-night rhythm.
About the support group XP-Friends
The support group XP-Friends is an association of sufferers and their relatives from German-speaking countries. Three families with children suffering from XP lead the support group and support its members. In addition to information, discussions and assistance with health insurance and official matters, there is also practical help with "initial equipment" for XP patients. This includes UV-safe clothing, a UV measuring device and, of course, face protection film. Once a year, the group comes together for a personal exchange. At each meeting, there is medical support, information and dialogue about how to deal with the disease. Find out more about the support group XP-Friends at www.xerodermapigmentosum.de.
Donation account XP-Freu(n)de - Mondscheinkinder
Bank: Kreissparkasse Steinfurt
IBAN: DE79 4035 1060 0073 8031 16
BIC: WELADED1STF
