Khyari (10) looks down the hall to check that the front door of the house is closed so as not to be exposed to sunlight. From Children of the Moon, 2013
Edition of 7 + 2 AP
Sheet size A2 (594 x 420 mm)
Piezography K7 Carbon Print on Museo Portfolio Rag Archival Paper 300 g/sqm
Print number: ZBR1500X-8
Xeroderma Pigmentosum, or XP, is a genetic disorder that affects the ability of skin cells to repair the damage done by ultraviolet (UV) light. This means that UV light can easily cause burns, cancers, and other skin malignancies. In extreme cases, those suffering from XP have to avoid exposure to even the smallest amount of sunlight, and even be wary of artificial sources of UV light, such as neon tubes and some energy-saving fluorescent lamps. This need to completely avoid sunlight has led to individuals with the disease being nicknamed Les Enfants de la Lune (Children of the Moon).
The incidence of XP in Tunisia is very high. Children from poorer families are the most affected, as less-educated parents fail to understand the disease or the preventative measures that must be taken, early diagnosis and avoidance of the sun is essential. State help for people with XP is minimal, though shortly before the 2010/2011 revolution, an NGO was founded to help raise awareness of XP and help people with the condition to gain better access to medical attention. – Zied Ben Romdhane