The Fars news agency, affiliated to Iran’s Islamic Revolutionary Guards Corps (IRGC), on Friday April 8, 2016, reported the death of a child due to the EB disease and lack of medical attention.

Epidermolysis Bullosa (EB) is a congenital disease with symptoms including severe skin sensitivity, blisters, sores and rashes. Patients need constant care.

An absence of healthcare in Iran’s deprived areas has put young children suffering from the disease on a slow and tortuous path to death. The belongings of these children must be sterilized and they require special treatment, but there has been no significant care for these children in the southern areas of Kerman province, and every day their physical condition deteriorates until their death. 

The disease and lack of medical facilities caused the death of 21-year-old Abu Naroui in 2013. 

Zainab Afzalpour is one of the children. Aged 10, she is in constant battle with her wounds. She is a resident of Hyderabad Roudbar village south of Kerman. Her little hands are covered with scars that have long been associated with her, the blisters never let her nails to grow and her fingers have become stuck together creating a tragic situation.

Zainab, Hamideh, Daniel, Zahra, Nasrin, Marzieh and Nazanin, are among children suffering from EB in deprived areas south of Kerman living in unsanitary environment and lacking adequate treatment facilities.