A better life is in reach for children with a rare genetic disorder that puts their lives at risk when exposed to the Sun. But a new protection suit derived from European Space Agency technology promises to let them play safely in daylight.
About 300 people – mostly children - across Europe have been diagnosed with the genetic disorder xeroderma pigmentosum (XP), causing extreme sensitivity to the Sun's ultraviolet (UV) rays. Patients cannot go outside in daylight, except with special protection - all UV must be blocked off, or else their skin and eyes may be severely damaged, eventually leading to cancer. "Life is very difficult for our son Alex," says Sandra Webb, mother of Alex, now eight years old and first diagnosed with XP at age four. "He can't do anything outside without first getting specially dressed." "But nobody produces anti-UV clothes for XP patients - there is no market. In the UK there are only about 40 XP-patients, 25 being young children. We had to find solutions ourselves, making masks to protect their faces and getting special deals with companies producing UV-protective fabrics. The helmet we have now mists up, you can't see or hear very well and you get very hot. These are things we asked ESA to look at."
In November 2002, ESA's Technology Transfer Programme (TTP) became involved in an effort to assist these children. "We immediately set up a working group," says Pierre Brisson, Head of ESA's TTP office. "This includes patient families and physicians, French company Bertin Technologies and Italian firm D'Appolonia. - businesses with experience of finding solutions to problems of everyday life on Earth using technology ESA has developed for space." The first prototype suit was presented at this year's Le Bourget air show: it is divided into two items; headgear protecting the head and face, and a suit covering the rest of the body.
