Eb in Iran
Eb disease is not limited to a specific area and these kind of patients could be found all over the world with equal dispersion. Accordingly, there could be some 1000 EB patients in Iran, 630 of whom have been identified and getting treated. In some provinces the number might be higher than other places due to cultural differences.
Since EB is a genetic disease, it could be more likely happen in case of family marriages. That’s why we can see in some parts of the country with more family marriages there are more EB patients as well.
According to the latest statistics, the provinces of Khuzestan, Fars, Sistan va Baluchistan, Kerman and Khorasan have the largest number of eb patients after Tehran and Alborz due to their centralization and migration. Unfortunately, in places like Sistan va Baluchistan the number of the cases of this disease has increased in the past years because of many problems in the area such as poverty and lack of awareness.
In total, the number of EB patients in Iran cannot exceed the global estimation and fortunately after a series of cultural measures taken in this regard the number of new born cases is expected to greatly decrease soon. To be mentioned that, currently there is no specific way to diagnose the disease and the only way to avoid it is that people should merely be very cautious with family marriages or marriages with relatives who have a history of the disease.
Iran EB Home
Iran EB Home is the only supporting NGO in the country that identifies and covers eb patients. It officially started its activity in 2015 with the cooperation of Health Ministry and some other organizations and it was registered 2 years later. This institute is the only center that supports eb children and patients offering them with treatment, medicines, aid as well as voluntary donation.
Since the eb disease is not well known in the country, this center’s activities focus on raising awareness, explaining eb, explaining the range of its effects and teaching proper care for patients. This center, by using mass media, has been able to get the community and authorities more aware about the risk of the disease.
Fortunately, Iran EB Home succeeded to raise the patients’ life expectation through proper care education. Regarding the high expenses of medication, this center has also managed to partly cover the patients’ medical expenses through fund raising, getting donors from inside and outside the country and communicating with related institutes and organizations. Iran EB Home offers workshops and training, medicine and assistance, nursing and public participation.
The center provides patients with the following services:
- Sending Mepilex bandages for patients freely every month
- Remitting monthly medical allowance
- Offering training and consultancy to the patients’ families for proper behavior with them
- Taking necessary measures for medical surgeries
- Remitting allowance for milk powder for infected babies
- Remitting allowance for orphan patients
- Meeting the patients’ demand through “Wish Tree” project
This institute also takes measures for cultivation and raising awareness in the society for how to deal with EB patients and holds a number of festivities and events annually to bring up the spirits of the patients through their presence in social gatherings and activities. The EB Home is also active in the international field and it hopes to remove obstacles in introducing EB patients to the domestic and international community.
Since May 2018 when the US pulled out of Iran nuclear deal, President Donald Trump announced the re-imposition of sanctions in two periods of 90 and 180 days. He also said warned to impose sanction on countries that do business with Iran. Although Trump had repeatedly said that the sanctions are targeting the government and do not include food and medicine, but we can see that they are targeting Iranian patients.
“Purchasing medicine cannot be excluded from economic sanctions. Economic crisis has direct negative affect on ordinary people’s health and their access to medicine and medical care” the World Health Organization said in its latest report last on winter 2019.
At the time being, EB patients are affected by US medicine sanctions and they are having very hard times. The Swedish company is refusing to sell Iran the needed bandages for the patients citing US sanctions and some other needed medicine have got extremely expensive and hard to get.
The lack of medications has affected the lives of EB patients to the extent that 15 of them have lost their unfortunately since then while some other got maimed and some other have lost their ability to walk. All that is because of the lack of a specific kind of bandage that is exclusively produced by only pharmaceutical company in the world and today EB patients have to feel this pain with their skin and flesh because of sanctions imposed by another country.
Regarding failure to lift medical sanctions, we have launched “Medicine Donate” global campaign for EB patients based on the idea of the fonder and manager of this organization so we can provide the patients with the needed medication with the help from donors across the world and deliver the medicine to children covered by Iran EB Home.