Maryam, seven-year old child affected by Xeroderma Pigmentosum from one of the deprived village in Iran traveled 2000 km to Tehran, for lack of health and medical services. Her father says that the sign and symptoms of Xeroderma Pigmentosum have appeared on her skin since 2013. It’s about years he traveled between cities because of his daughter’s disease, since there isn’t any healthcare facilities in small villages and her condition is getting worse. These days her lips and eyes are affected too.
Maryam is seven years old and it’s time for her to go to school, but teachers rejected her because other children may afraid of her appearance. Maryam, her cousin who is recently afflicted and their family could travel to Tehran with help of Rare Diseases Foundation of Iran to follow up their curative process. Dr. Babak Khati, pediatrician at “Nader” clinic says: “This disease is one of the most rare skin condition that affects the eyes, the intestines and also the skin. Thus, to control the disease, endocrine, metabolic, ophthalmic and dermatological specialists should visit the patient, regularly.
Xeroderma Pigmentosum is a kind of rare genetic autosomal disorder that DNA rebuilding factor is damaged via ultraviolet ray and loses its efficiency. It is accompanied by brown pigmentation and scarring on the skin.