0322 GMT August 04, 2021
The sanctions imposed by the US and Western countries on Iran have not only created livelihood problems for many families but they have their worst effects on people suffering from epidermolysis bullosa (EB), also known as butterfly patients, and have caused several deaths.
Although the problems faced by EB patients have been temporarily solved with the arrival of a shipment of the wound dressings needed by them, concerns about the issue still remain and have become the main difficulties faced by families of such patients.
Hamid Reza Hashemi Golpaygani, the founder and managing director of Iran EB Home Foundation, told Iran Daily that US unilateral withdrawal from Iran’s 2015 nuclear deal, also known as JCPOA, and the escalation of sanctions against the country caused the problems to arise.
He added that contrary to the claims of US officials who say that foods and medicines are not subject to sanctions, the move has created many difficulties for those in charge of providing treatments for EB patients.
He stressed that the problems created by sanctions in the field of transportation, shipping and banking relations also caused the medicines, required by EB patient, not to be delivered to Iran on time.
“With the intensification of sanctions, 15 EB patients died in Iran from May 2018 to May 2019, directly due to the lack of special dressings for the disease,” he said.
He added that usually when the wounds of EB patients become infected, they need a special dressing called Mepilex, a product of a Swedish company, noting that based on research, over 50 countries in the world have decided to use this product to treat patients’ wounds.
He noted that this dressing is currently the most important need of EB patients.
“At that time, we had many conversations with the Swedish company to provide the dressings. They initially did not respond, but later they announced that due to the sanctions, it is not possible to transfer money from Iran to Sweden,” he said.
“After the death of those 15 people, we appealed to the media for help so that our voice could be heard by the whole world. Following negotiations conducted by Iran’s permanent representative to the United Nations with related officials, the UNICEF’s representative in Iran visited the EB Home Foundation and confirmed the problem,” he said.
He noted that thanks to the financial assistance of Germany, UNICEF delivered 5.8 tons of dressings to Iran’s Health Ministry to be supplied to patients.
He went on to say that the dressings required by Iranian EB patients within the next 12 months have been provided.
Expressing concern about running out of dressings, he harbored hope that the sanctions would end soon.
Golpaygani said that EB is a genetic medical condition, noting that usually 95% of cases caused by consanguineous marriages.
He said that global statistics show that one out of every 50,000 children might be born with the EB disease, pointing out that between 1,000 to 1,200 EB patients are estimated to live in Iran, 850 of whom have so far been identified.
According to him, due to the high role of consanguineous marriages in the occurrence of this ailment, special genetic tests should be performed to diagnose this issue before marriage.
“EB is a congenital disease. Patients are usually born with symptoms such as severe wounds, and if their wounds are mild, the illness will progress in the future. In addition to the skin, the mucosa, esophagus, heart and other internal organs of the patient will gradually be affected by the disease,” he observed.
The managing director of Iran’s EB Home Foundation said that, thus far, no treatment has been found for this ailment worldwide, adding that a lot of research has been carried out on the disease in Austria and France.
“We established relations with several EB home foundations of the foreign countries.
“In the field of EB treatment, we have the same advancements in medicine as developed countries, but due to sanctions, they provide better services and facilities in this regard,” he said.
He noted that surgeries related to the complications caused by EB are performed in Iran in the best possible manner, and Iranian physicians are well-aware of the updated scientific knowledge which are available in the world about the disease.
Emphasizing that the foundation is run without any government financial assistance, he thanked Iranians, residing inside and outside the country, who provide financial support for the foundation.