Nihal, Child of the Moon
In Nihal’s life, appearance holds a particular place. Every inch of her skin bears the marks of Xeroderma Pigmentosum (XP): severe pigmentation caused by an extreme sensitivity to ultraviolet light. To protect herself, she wears protective gear worthy of a science fiction film—an astronaut-style helmet, a long waterproof coat, gloves, and a dosimeter in her pocket.
Little known and still poorly understood by scientists, XP can lead to skin cancers and lesions. As the diagnosis is often made several years after the first exposure to sunlight, irreversible damage may already have occurred. Nihal was diagnosed at the age of two and a half. At the time, she was living in Algeria, where she was born, with her parents. Overnight, the family had to leave the country to protect their daughter. Nihal grew up in Saint-Étienne, where she still lives today. Despite the many obstacles in her path, she strives to live as normal a life as possible. I wanted to document her daily life and portray this journey of resilience and determination, which commands deep admiration.
