TEHRAN – There are currently 11 centers operational across Iran providing services to patients who are suffering from Epidermolysis Bullosa or EB, a rare genetic connective tissue disorder, IRNA reported.

The centers are located in the cities of Isfahan, Shiraz, Tabriz, Mashhad, Kerman, Kermanshah, Ahvaz, Rasht, Tehran and Arak, said Jamshid Kermanchi an advisor to the health minister.

There are some 800 patients identified with EB in Iran, of them around 500 have been registered by the Ministry of Health, he added.

EB treatment is very complicated and has many difficulties, Iran’s Food and Drug Administration Director Rasoul Dinarvand told IRNA.

“Unfortunately, the EB disease has no cure and it just needs intensive care and sometimes several medical operations,” he added.

Since one year ago, the administration has been providing wound dressings for EB patients, he said, adding that 50 billion rials (about $1.2 million) is spent annually on healing the patients, he said.

Dressing management in EB simplex focuses on preventing infection, cooling the blister sites and protecting the skin from trauma.

There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma.

Internal organs and bodily systems can also be seriously affected by the disease.

Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is lengthy and requires multiple interventions from a range of medical specialists.

SB/MG