TEHRAN (Al Jazeera) -- Hadi Keykhosravi is one of about 1,000 people in Iran stricken with epidermolysis bullosa (EB), a rare and deadly genetic disease that causes blisters, sores and wounds to form on the skin.
It is such a painful condition those with EB often compare their skin to third-degree burns.
“It feels like boiling water, drop by drop falling on your skin. You can feel this pain no matter the time of day; you can see how you’re losing your skin,” Keykhosravi, 29, told Al Jazeera from his home in Sabzevar, northeastern Iran.
But thanks to imports of special bandages from a Swedish medical company, Molnlycke, his pain was relieved for a few years and his condition was easier to manage.
The product, called Mepilex absorbent foam dressing, could easily absorb fluid from the wound, allowing it to heal faster and making life more bearable, Keykhosravi said.
“I could easily do my daily work, I could change my clothes without the sores getting stuck to my clothes,” he said.
But after the United States under former president Donald Trump withdrew from Iran’s 2015 nuclear deal with world powers in May 2018 and reimposed unilateral sanctions on Iran, Molnlycke stopped exporting the Mepilix product to Iran and his temporary relief was brought to an end.
The alternative in Iran is to use regular dressings with petroleum jelly along with medication to control the sores and prevent infection. But it is not as effective, Keykhosravi said.
Without Mepilex, Keykhosravi found himself unable to control a wound on his leg that continued to grow. The infection eventually spread to his bloodstream and on June 16, 2020, his leg had to be amputated from the knee down to prevent the infection from spreading further.
“It was a painful procedure and mentally frustrating to lose my leg because of this,” Keykhosravi said.
According to The Hague-based Iranian Centre for International Criminal Law (ICICL), nearly 30 Iranian EB patients – mostly children – have died since Molnlycke stopped selling its dressings to Iran. For EB survivors, the pain has increased by 70 percent.
Responding to an inquiry by the Iranian NGO EB Home, which helped provide patients in Iran with the Swedish dressing, Molnlycke said in a letter in March 2019 that because of U.S. sanctions it “decided not to conduct any business with relation to Iran for the time being”.
“This also applies to business conducted under any form of exceptions to the US economic sanctions,” it said.

‘Harming Iranians’
While the United States has claimed it kept a “humanitarian window” open under its sanctions, Human Rights Watch (HRW) stated in 2019 the “overbroad” sanctions are still “harming Iranians’ right to health including access to life-saving medicines”.
That is why ICICL filed a complaint to the Swedish National Contact Point stating Molnlycke breached Organization for Economic Cooperation and Development guidelines “by failing to undertake appropriate human rights due diligence, adversely affecting the human rights of EB patients in Iran and failing to remedy its impacts”.
“Disengagement decisions” require mitigating “likely impacts” and if companies are required to disengage, it should be done in a “responsible manner”, the complaint said.
It called on Molnlycke to either find a way to continue selling its products to Iran by obtaining an exemption from U.S. sanctions or to arrange a suitable alternative so children can get the life-saving product they need.
It also called for reparations for children impacted and families of EB patients who died from the disease.
Molnlycke did not respond to Al Jazeera for comment by the time of publication.
Muhammad Zakerhussein, director of the ICICL, told Al Jazeera that the complaint “is not a political action, but an initiative for humanity and justice.
“We believe that unilateral sanctions may have adverse impacts on the human rights of the civilian population in the sanctioned country. The Molnlycke case is a clear proof of such adverse impacts,” Zakerhussein said.
“The irresponsible conduct of the Swedish company resulted in irreversible harm to Iranians. Taking into account this fact, we have approached the Swedish National Contact Point in hope of reparation and accountability.”
Tara Sepehri Far, an HRW researcher, told Al Jazeera “it’s not uncommon to see companies ‘over-complying’ with sanctions that are very expansive and complicated due to fear of getting punished.”
“Unfortunately patients are at the end of a very complicated pipeline, whose problems are exacerbated by sanctions and lack of internal transparency,” Sepehri said.

‘Intentional Damage’
In April, the High Council for Human Rights of Iran also sent a letter to the Council of the European Union that said a number of EU member states have imposed “intentional damage on the health and wellbeing of the Iranian people, particularly children, women, the elderly, and persons with disability”.
It listed the names of more than a dozen children who died from EB because of a lack of access to vital drugs, and described how European countries refused to work with Iranian firms on medicine, medical equipment and vaccines.
Keykhosravi said everyone in the world should have access to the Mepilex dressing, no matter where they come from.
“Sanctions from governments shouldn’t cause suffering for people,” Keykhosravi said.
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