The Health Ministry is closely pursuing the problems of EB patients and is determined to alleviate their plight, said Fatemeh Hashemi, head of the Iranian Rare Disease Foundation (IRDF).
“Several measures have been taken to assist them, including the establishment of a specialized Health House in June for Epidermolysis Bullosa patients,” she told IRNA.
The Health House was built following a directive from Health Minister Hassan Hashemi, in cooperation with the IRDF and the Mostazafan Foundation (a charity for the oppressed and disabled), and is managed by the Iran University of Medical Sciences. Free medical services are provided.
EB is a group of inherited connective tissue diseases that cause blisters in the skin and mucosal membranes. The prevalence was estimated to be approximately 8 per million and the incidence 19 per million live births. It is a result of a defect in anchoring between the epidermis and dermis, resulting in friction and skin fragility. It is not an infection or contagious and is not due to an allergy. The severity ranges from mild to lethal.
‘Butterfly Children’ is a term often used to describe younger patients (because the skin is said to be as fragile as a butterfly’s wings), ‘Cotton Wool Babies’, or (in South America) ‘Crystal Skin Children’.
The ministry is also providing the bandaging materials for patients through the Food and Drug Administration.
Since their skin is too fragile for normal dressings, EB patients need special type of bandages for their bleeding wounds. Such bandages are as vital as insulin shots for diabetics or chemotherapy for cancer patients.
“The special type of bandage is not available in the domestic market, and is imported by the ministry. Ensuring continuous supply of the bandages will lift a huge burden off the afflicted patients and their families,” Hashemi stressed.
EB patients are also in constant need of supplementary drugs to compensate for the blood they lose through their perpetual wounds. Designated clinics provide the medications. The FDA has been importing the required medications and supplying it to the affected, free of charge.
The ministry has also planned to send physicians and nurses to regions in the country where the condition is prevalent.
It is estimated that 500 people suffer from EB in Iran. So far, 150 have visited the IRDF and were referred to the Health House for prognosis and care.
