A specialized health house for EB (Epidermolysis bullosa) patients managed by the Iran University of Medical Sciences will be established and equipped to provide them with free medical services, said deputy health minister and head of the Food and Drugs Administration Rassoul Dinarvand.
The establishment of the health house follows a directive from Health Minister Hassan Ghazizadeh Hashemi. The Iranian Rare Disease Foundation and the Mostazafan Foundation (a charity for the oppressed and disabled) are cooperating in this effort.
“The services will include special dressing materials and medicines as well as diagnosis, control and prognosis free of charge by specialists,” he said, ILNA reported.
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 dressing material for patients differs from the norm as their skin is too fragile for bandages; the special type of bandage required is not available in the domestic market,” Dinarvand pointed out, adding that FDA imports the required medications and supplies them without charging.
EB patients are also in constant need of supplementary drugs to compensate for the blood they lose through their perpetual wounds. Designated clinics will provide the medications.
Lack of sufficient public information on the disease has caused the afflicted persons to be socially ostracized. That in turn brings about loneliness, depression and exclusion from the community. Raising awareness on the disease and providing social support to the patients could help alleviate a part of their plight.
