At a meeting held between the High Council for Human Rights and 60 ambassadors, staff and heads of missions of international and regional organizations living in Tehran, which was attended by the Secretary and International Deputy to Secretary of the HCHR on Sunday, Hadi Kaykhosravi, Iran’s EB patients’ representative said: I am 29 and I am a postgraduate student in criminology. EB or epidermolysis bullosa is a genetic skin disease, he clarified.
"In healthy people, the outer layer of the skin is connected by protein hooks made of creatine or collagen, and these hooks prevent the two layers from moving separately, but in people with EB due to production defects, these hooks are not made properly. For this reason, the slightest action that causes friction between two layers of skin, such as rubbing or squeezing, causes blisters and even dangerous wounds. The world of patients with EB is just as fragile and delicate as the wings of butterflies.
Mentioning the problems and challenges of butterfly patients, Kaykhosravi said that blistering of the skin after minor injuries or temperature changes, adhesions of the fingers and toes due to frequent wounds, poor eyesight and corneal adhesions, chronic and widespread infections, malnutrition and delay In development, skin cancer due to old and unhealed wounds, heart and kidney failure and depression and many psychological problems are among the problems of butterfly patients.
He further emphasized that butterfly disease in Iran has been followed up since year 2016 and before that no one had talked about butterfly disease in Iran. The services provided for EB patients are very limited and there are shortcomings. According to official statistics, about 800 EB patients have been known in Iran.
In another part of his speech, the representative of EB patients reminded that if the life of normal human beings depends on the existence of climate, the survival of patients with butterflies depends entirely on the timely use of special dressings, equally necessary, important and fundamental. In a nutshell, dressings act as insulation to protect patients' wounds and blisters, making them less likely to suffer during the day.
He acknowledged that Iran's banking sanctions and currency restrictions have been one of the reasons for the shortage of medicinal supplements for EB patients. Since May 2019, with the re-imposition of sanctions, there has been a great shock to the Iranian special patients’ community. While human rights advocates believe that US sanctions against Iran have not in any way affected the right to health and access to medicine and treatment, special patients were confused about the medicines they needed in the markets.
Kikhosravi concluded by citing an example on the Swedish company Moon Lee which announced in an official letter to Iran’s EB House that it would not be able to provide the dressings needed for EB patients due to US sanctions. This global deception of excluding medicine from the list of sanctions in practice causes the death of our compatriots.