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 ESA space 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.”
Joana Trindade | alfa
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