US sanctions hurt Iran's 'butterfly kids'

TEHERAN — As if suffering from one of the rarest skin disorders ever known is not already painful enough for 7-year-old Mohammad Rezaei, the inhumane US sanctions are also rubbing salt into wounds.

Epidermolysis bullosa, or EB, is a rare genetic condition that causes fragile blistering skin. EB patients are often referred to as "butterfly children" because their skin is as fragile as a butterfly's wings. The blisters may appear in response to a minor injury, even from heat, rubbing or scratching. The disorder is so painful that patients tend to liken their skin's burning sensation to that experienced under third-degree burns.

What makes the story of Iranian EB patients even more heartbreaking is that a significant portion of them are children like Rezaei.

Rezaei said his skin "easily gets injured" and the consequent wounds and infections are very painful.

Despite being just a child, he knows very well why he is — at least for the time being — doomed to suffer such a degree of pain and inconvenience. Due to US sanctions, there has been a lack of necessary dressings for children like him.

A very useful dressing like Mepilex by Swedish company Molnlycke can alleviate these patients' pain and suffering to a considerable extent, making life easier for them. In fact, these patients' survival depends entirely on the timely use of the dressing. However, US sanctions have deprived EB patients in Iran of this temporary yet palpable relief.

It came as over a dozen EB patients in Iran have reportedly died of the disease in the absence of much-needed medical supplies. Others suffered from severe physical injuries.

Iran has been under US sanctions for the past four decades. The sanctions intensified following the United States' unilateral withdrawal from a 2015 nuclear deal in May 2018, formally known as the Joint Comprehensive Plan of Action, or JCPOA.

Similar sufferings

As her son is bearing similar sufferings, Akram Ait urged those behind the sanctions and the consequent lack of access to Mepilex dressings in Iran to "put themselves for a second in our shoes".

Hamidreza Hashemi Golpayegani, an Iranian cleric and founder of nonprofit EB Home, said: "Previously, we had easy access to the (Mepilex) dressings."

However, following the US' unilateral withdrawal from the JCPOA, "we felt the intensity of the sanctions on us to a greater extent", he said.

"When the Mepilex dressings are applied to the wounds, they allow EB patients to wear clothes and remove the dressings from their wounds without removing the flesh and skin and with less pain," said Hashemi Golpayegani, whose own daughter has been suffering from EB for the past 21 years.

Teheran's cry has been echoed by United Nations human rights experts. After her visit to Iran in May, Alena Douhan, UN special rapporteur on the negative impact of unilateral coercive measures on the enjoyment of human rights, concluded that sanctions, secondary sanctions and different forms of overcompliance have a serious negative impact on the country's economy, leading to "serious violations of human rights and humanitarian challenges".

"Of particular concern is the significant challenge faced in the procurement and delivery of lifesaving medicines and medical equipment, produced by foreign companies and destined for the treatment of rare diseases," she said in her report to the UN Human Rights Council.