Pol Dominguez, 11, is enjoying his summer vacation in Spain. But unlike most kids his age, he doesn’t spend his days at the beach or pool, instead staying at home to avoid the potentially deadly UV rays.
Patients are unable to repair their DNA after sun damage, putting them at high risk of developing cancer.
His case is extreme: even a short exposure to sunlight causes severe burns.
With just 2.3 cases per million live births in Western Europe – and around 100 people living with XP in Spain – the inherited condition is usually detected early when burns appear.
Dominguez and his family, who live in Barcelona, have radically adjusted their habits to avoid UV exposure.
To avoid severe burns and blisters, Dominguez wears a hood, jacket, sunglasses and gloves outside, even in the winter.
She stays indoors as much as possible in the summer, but when she needs to leave the house, the protective clothing is hot and uncomfortable.
Dominguez’s school has adapted windows and lights so he can live as normally as possible, although he has to bundle up for outdoor activities and wear a UV meter to check the environment is safe.
“It’s very hot and I’m using a fan to cool it down,” he told Reuters on one of the last days of school, using a portable fan under the shield he wears over his face.
Dominguez’s home is UV-resistant, with protective film on the windows, blinds drawn and fans to keep the environment well ventilated, said his mother, Xenia Aranda.
“Around 10:00 p.m. we say, ‘What would we like to do, Pol? Go to the beach, get ice cream, go for a run?'”
When the sun goes down, he can finally go to the beach without protective gear. Just eating ice cream outside or turning your towel into a superhero cape puts a smile on his face.
As heat waves become more frequent and intense and spread across the seasons due to climate change, the risks for Pol and others like him are increasing.
“The more hours of sunshine, the more sun damage. Therefore, more diseases,” said Asuncion Vicente, a pediatric dermatologist at Barcelona’s Sant Joan de Deu Hospital.
