For an 11-year-old from Spain, summer doesn’t mean carelessness, baths and sun, but strictly staying indoors.
Summer is not the same for all children. For an 11-year-old boy from Spain, summer doesn’t mean laziness, baths and sun, it means staying indoors strictly to avoid the UV rays that can kill him.
Dominguez has Xeroderma Pigmentosum, a rare disease that affects her skin and eyes. Patients are unable to repair the damage to their DNA from UV exposure, which puts them at risk of developing cancer.
The situation of the 11-year-old child is extreme: even a short exposure to sunlight causes serious burns.
With only 2.3 cases per million live births in Western Europe, and about 100 in Spain, this inherited disease is usually detected early when burns appear.
An 11-year-old boy and his family living in Barcelona have completely changed their habits to avoid exposure to ultraviolet radiation.
Wears a hat, coat, sunglasses and gloves when going out, winter and summer, to prevent serious sunburn.
In the summer, he can stay indoors as much as possible, but when he has to go out, the protective clothing is hot and uncomfortable.
His school has installed windows and lighting so that he can live as normal a life as possible, although he must take special precautions when he is outdoors and carry a UV Meter to check that the environment is safe.
Her house has protective film on the windows, blinds and fans. He can go out in the evening: ice cream, jogging, etc. When the sun goes down, he can finally go ashore without protection.
But as heat waves become more frequent and intense due to climate change, the risks for children like her are increasing.
What is xeroderma pigmentosum?
THE Xeroderma Pigmentosum is a genetic disease.
The main damage is a deficiency of the endonuclease enzyme needed to repair sun-induced DNA damage.
The initial lesions look like lentils and gradually the skin becomes dry and thin. Lesions develop into hyperkeratosis and then skin cancer after puberty.