Enter by a smile. This is the first thing you see on the door when you want to enter Eb community room. You have to put off your shoes when you want to get in, to reduce the risk of patients getting ill.
Entering the rectangle shape room, you can see men and women divided two sides of the room and the children by their mothers. Children with a lot of scars and blisters on their skins and some of them have stuck fingers because of the severity of their disease.
The youngest member of this community is Nazanin Zahra with six months old, she is carried in a hand cradle and her parents who are relatives take a good care of her. Big blisters are seen all over her little body, her hands, legs and her face. She has also a respiratory problem as her lungs are affected, too.
As her father says, she had been affected by Eb since her birth; it was just tipped red on her fingers and symptoms increased gradually.
He complains of physicians and nurses treat to her daughter, they constantly sent them from one hospital to another, finally she hospitalized in one of them.
Once when they wanted to take her blood for testing, her skin peeled and they delivered her to CCU. His father said they used my child as a sample because they haven’t seen such disease. Besides, he added how much he irritated by hospitals staff that he prefers never go there again and if her daughter gets sick he gives her an acetaminophen when she has an infection he gives her antibiotic instead of taking her to the hospital.
He is a worker and he cannot afford the high expenses of drugs and treatment but he never neglects her daughter treatment. He earns 390 thousand toman and the cost of her drugs is 1 million toman, as he said EB community helps them partly.
Masoumeh is another 3-year-old child who one of her eyes is brown and the other is blue because of EB. Her mother says there is a layer covered her left eye and it needs surgery and her eyes are healthy,it is said by her doctor.
Her mother says one of her legs didn’t have skin and her foot thumb wasn’t completed at her birth time but after a while, they cured and got better.
Her mother said they intend to do surgery on her eye, leg and hand but they cannot pay the cost. Her mother talks about her sleep since she has lots of scars on her body she cannot sleep well and her mother scratches her body all night long. She demands to set a special nursery room for these children to solve their problem.
Another patient is Nazanin Zahra with 3 years old. Her mother studied about her disease very much and she talks like a doctor. She as well asks for setting up a special medical center for these children. For their oral treatment, they need to be anesthetized so they need facilities.
Her mother adds, there is no specialty center for poisoned patient and once when they wanted to inject a serum to her, Nazanin’s vessel torn three times and the floor covered in her blood.
She also complains of the high expenses of drugs and treatment for EB. She said each package of MEPILEX costs 11000 tomans and the number of packages we used depends on the weather because if the weather is hot and dry we have to use more MEPILEX. She urges officials pay more attention to patients affected by EB. Poor financial status is the common point in all these families stories.
Ali Davoudian General Manager of Rare Diseases Foundation of Iran arrived after an hour. According to his words, a letter has been sent from the Presidency to Department of Housing and Urban Development in order to allocate a land 5000 meter to the foundation for establishing a special clinic for patients with EB.
Moreover, he mentioned that the biggest problem of the families is providing bandage and the difficulty of washing the scars. Ultimately, he pointed to the fact that about 40 thousand people in the country affected by this disease and he suggested because attending public space is difficult to these patients, in one of the large hospitals in Tehran, such as Imam Khomeini (RA) or Labbafinejad, thousand meters of land devoted to patients with EB.