TEHRAN – Iran has allocated a substantial budget to improve services for patients suffering from Epidermolysis bullosa (EB), ISNA quoted Jamshid Kermanchi, an advisor to the health minister, as saying on Sunday.

“There are three main objectives regarding EB disease in the country. First, the availability of services should be increased since travelling is so demanding for these patients and their required services should be provided locally,” he highlighted. Decreasing the costs of treatment for patients and boosting the quality of services are the next objectives, he noted. 

“The annual budget allocated to provide health care services to these patients is some 30 billion rials (nearly $700,000).”

Currently, some 600 EB patients have been diagnosed in Iran while it is expected that some 800 patients live in the country, Kermanchi said.

He went on to say that the diagnosed patients have been registered by the health ministry and their required services, including blood and urine tests, medical imaging, skin and tissues sampling, and plastic surgeries will be offered accordingly.

Also, bandages for patients suffering from Epidermolysis Bullosa (EB) is free of charge, he pointed.
The aim is to minimize the costs of treatment for the patients, he said, adding that most of these services are covered by insurance companies.

Referring to the huge cost of EB treatment, Kermanchi highlighted the importance of preventing the disease via pre-birth genetic tests available. “The priority for doing the tests are with those who have a child with EB and want to conceive another child.”

If the disease is diagnosed before the 19 week of pregnancy, the license for abortion will be issued, he concluded.

About EB

Epidermolysis bullosa is a group of rare diseases that cause fragile, blistering skin. The blisters may appear in response to minor injury, even from heat, rubbing, scratching or adhesive tape. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or the stomach.

Most types of epidermolysis bullosa are inherited. The condition usually shows up in infancy or early childhood. Some people don't develop signs and symptoms until adolescence or early adulthood.

Epidermolysis bullosa has no cure, though mild forms may improve with age. Treatment focuses on caring for blisters and preventing new ones.

MAH/MQ/MG