Real story Real pains (story of Iranian butterfly patients)
By: Eb Home
Tags: Iran, Support, Us Sanctions, Eb Patients, Butterflies Children

Are you burnt or leprous? Why are your hands folded? What are these blisters for? Why are your teeth like this when you are only seven years old? These are just a few of the questions that EB patients must answer every day. But neither burns nor leprosy are the cause of blisters and wounds in butterfly patients. They only have a rare skin disease called EB due to a genetic disorder.

EB or Epidermolysis bullosa is a genetic skin disorder. 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 a lack of protein production, the 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, exactly like the wings of butterflies. Doctors have compared the pain of EB to a third-degree burn. That pain is as painful, hard and heartbreaking as burning.

butterfly patients in Iran

Number of butterfly patients in Iran

According to forecasts, approximately, 1200 of our compatriots in Iran are infected with this disease. Iran EB Home, the only official center to support the butterfly patients in Iran, covers about 700 patients with EB and provides them with welfare, treatment and financial services. Most butterfly patients in Iran are suffering from a severe form of this disease, which means very painful sores and blisters, adhesions on the fingers and toes, digestive problems, problems related to the mouth and teeth, etc. Indeed, if we want to understand EB patients’ pain for a moment, we have to say that the pain they feel is something like the pain of a third-degree burn so heartbreaking and painful.

EB patients’ problems

· Blisters on the skin after minor injuries or changes in temperature

· Adhesion on fingers and toes due to frequent wounds

· Esophagus adhesion due to repeated wounds and blisters

· Poor vision and corneal adhesion

· Chronic and widespread infections

· Malnutrition and growth retardation

· Skin cancer due to the old and unhealed wounds

· Heart and kidney failure

An explanation of the types of EB disease

There are three types of EB disease: 1- Simplex 2- Junctional 3- Dystrophic

EB Simplex

Epidermolysis bullosa simplex abbreviated EBS is a common term for all types of EB in which blisters occur inside the outermost layer of the skin.

Junctional EB

Junctional Epidermolysis bullosa abbreviated as JEB. The word Junctional is derived from the Latin word iunctio meaning connection. This junction is also known as the “base membrane”. The disease is usually severe. In its most serious forms, large (sore) blisters on the face, body, and legs because of complicated infections and severe dehydration can threaten life. Life is also threatened by blisters that affect the esophagus, upper respiratory tract, stomach (abdomen), intestines, urinary and genital system.

Disruptive EB (DEB)

The word dystrophic means overthrowing derived from an ancient Greek syllabus, dys, meaning bad, and the syllabus, tropein, meaning growth and food. Because people with this form of EB have more problems with eating more than other people with the disease, this name is given to this form of EB. Patients with EBD, in addition to blisters, suffer from other problems, such as adhesions to external organs, for example, the fingers and toes and also adhesions to internal organs.

And a painful truth:

There is no cure for EB disease

How to care for butterfly patients’ wounds

If ordinary human beings’ life depends on the existence of climate, the survival of butterfly patients is entirely dependent on the timely use of special dressings; equally necessary, important and fundamental!

If the special dressings aren’t available for EB patients, they will face some problems such as wound and blisters infections, hardships in changing the clothes which are stuck to the wounds, the feeling of pain and burning when the wounds and blisters hit to a tough things. In one sentence, dressings act as an insulator to protect patients’ wounds and blisters so that they suffer less during the day. In addition to dressings, patients with EB need other drugs, vitamins and supplements. Unfortunately, these items have been on the list of sanctioned pharmaceutical items in Iran since 2018. Lack of access to these items not only weakens the EB patients’ general body system but also causes severe wounds and blisters.

US Sanction on Bandage Iranian butterfly patients

Unfortunately, since 2018, the dressing provided to butterfly patients by the help of the Ministry of Health has been subject to sanction so that it has created a lot of problems for butterfly patients. Unfortunately, the sanction of dressings is making the conditions of butterfly patients more difficult day by day. Patients who have to be bandaged daily due to the severity of the wounds but now they have to change their wound dressings once a week in the most optimistic state. It means more pain, more burning and more painful blisters. Dressings sanction is completely against human rights rules. Butterflies are still hoping for the day when the news of the lifting of sanctions will be in the headlines.

Iran EB Home

The only official center to support the butterfly patients in Iran

EB Home has started its activities as the only official center to support the butterfly patients in Iran in order to identify, provide services to the butterfly patients, create culture and raise public awareness since 2015. Due to the unknown nature of EB disease in the country, the activity of EB Home has been able to increase the sensitivity of the community and officials to this disease by attracting the cooperation of media and informing to some extent.

Identifying the butterfly patients in all parts of Iran, forming a medical commission, sending dressings to butterfly patients and depositing drug and treatment allowances to the accounts of the patients supported by EB Home are among the services of this center.

This institute has been registered as the Institute to Support the Special Skin Diseases with the registration number 43205 as a non-governmental and independent organization in 2017.

EB Home has identified and covered about 700 lovely butterfly patients until now.

EB Home Services are currently as follows:

• Sending dressings to patients monthly

• Depositing medical allowance

• Educating and consulting patients’ families about how to deal with the patient properly

• Taking the necessary actions for the patients’ required operations

• Depositing milk powder allowance for sick babies

• Depositing orphan allowance

• Fulfilling the patients’ wishes through the “Wish Tree” project

• Sending pharmaceutical and treatment package and also Covid-19 prevention package to the patients

Depositing living allowance to the butterfly patients’ personal accounts

The provincial trips of Iran EB Home

The provincial trips of Iran EB Home have been started to visit butterfly patients since 2018.

Objectives of provincial trips:

Visiting the butterfly patients in all parts of Iran

Identifying their problems, needs and challenges

Following-up the livelihood problems and taking the necessary actions to do the butterfly patients’ surgical affairs.

Fulfilling the butterfly patients’ wishes and …

Fortunately, relying on God Almighty, despite the critical conditions of the corona outbreak from May to September 2020, we were able to travel to 12 provinces (Mazandaran, Khuzestan, East Azerbaijan, Sistan and Baluchestan, Khorasan Razavi, Fars, Kermanshah, Lorestan, Isfahan, West Azerbaijan, Gilan, Zanjan) to visit the butterfly patients in the cities of the mentioned provinces and to be informed about their problems and needs.

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EB patients’ pain never goes away, but it will be calm with your support, why not?

For supporting EB Iranian Butterfly patients click in the link below:

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Website: ebhome.ngo/en

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Phone: +98 (21) 41143