Nihal, Child of the Moon: how she lives with extreme UV sensitivity

"Rare Disease Day, on 28 February, highlights the more than 6,100 conditions identified worldwide, including xeroderma pigmentosum (XP), a rare genetic disorder that affects just over 100 people in France. Those affected are often referred to as Children of the Moon, a name that reflects their extreme sensitivity to ultraviolet light."

"Her skin is marked with heavy pigmentation which is a result of an extreme allergy to ultraviolet light. She wears a helmet, a long leather coat and gloves to protect herself. An outfit straight out of a science fiction movie, but essential, as Nihal's risk of developing skin cancer is about 4,000 times higher than the general population."

"Because her skin is extremely fragile, medical checkups are part of her routine. She must be regularly examined to ensure that no melanoma is developing. Even the slightest exposure to sunlight can have serious consequences."

Xeroderma pigmentosum (XP), known as Children of the Moon, is a rare genetic disorder affecting just over 100 people in France. Those with XP experience extreme sensitivity to ultraviolet light, requiring constant protection through specialized equipment including helmets, long leather coats, and gloves. Individuals with XP must monitor UV levels using dosimeters and can only safely remove protective gear when UV levels drop to zero at night. The condition causes heavy skin pigmentation and dramatically increases skin cancer risk—approximately 4,000 times higher than the general population. Regular medical checkups and melanoma screening are essential components of disease management. Even minimal sunlight exposure poses serious health consequences for those affected.

Read at www.theguardian.com