
Nihal's UV Shield: living with xeroderma pigmentosum in France
Nihal was diagnosed with xeroderma pigmentosum at two and a half and must live under near-total UV protection—helmet, long coat, gloves—because sun and some artificial lights can cause severe damage and raise skin cancer risk by about 4,000 times. With support from the Enfants de la Lune association, she attends UV-filtered school spaces, pursues indoor sports, and leads a life that is almost normal: she has become a freelancer in Saint-Étienne, married in 2025, and dreams of a family, while staying connected with other “Children of the Moon” through annual gatherings that help cope with daily challenges and stigma.













