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| Challenges of a patient dealing with a rare sickness |
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 This piece describes the life of a sick man suffering from a rare disease while he has to provide for a family of three.
Living in the green province of Gilan, which lies along the Caspian Sea, the 32-year-old Mehdi Alipour endures the rare disease EB, a condition in which the skin pretty much falls off.
Epidermolysis bullosa (EB) is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000.
“From the onset of my childhood, I underwent a great deal of hardships and adversity,” Mehdi told the Mehr News Agency reporter. “Four months after my birth, my face and hands started to blister and unfortunately since the doctors couldn’t diagnose the disease, my condition worsened. Eventually after having gone through many tests, I was diagnosed with the EB.”
Mehdi remembered the bitterness of people’s reaction to his disease and the lonesome times at school since nobody intended to have him as his friend.
“I am a construction worker and working with cement is torture to my bodily blister. Today, I have lost my hands’ total skin, but I still have to keep on doing the same job to take care of my baby’s needs.”
Mehdi is asking the newly elected government to care for patients grappling with rare diseases and provide welfare state/social security for them and provide far better work conditions.
MG/PA
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