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What it's like to fight a life-long battle against a chronic disease

October 2, 2014, 3:00 pm | This story has an Influence Score of 734

By riazhussain

Some problems last for hours, others for days and months and still others for years or an entire lifetime. Some people may  begin to grumble when they have to face temporary problems. But, the sight of people who have been struggling all their life to get rid of problems  makes us speechless. For instance, there are diseases which persist throughout life.  Such physical disorders mean life-long battles and require intensive management. The victims of these diseases have to live with life-threatening complications. They have to seek regular appointments with physicians, undergo medical tests and check-ups, and  maintain emotional balance and confidence.  Crohn's disease, chronic kidney disease, colorectal cancer, lung cancer, diabetes and thalassemia are some of such diseases.  In this story we are going to introduce a brave girl who has been fighting thalassemia or Mediterranean anemia, a genetic disorder, for he past 16 years. 

Her name is Mehvish alias Mehro. I came to know about her through a friend. When she was a child, she would frequently have fever. Her constant sickness in her youth vexed her parents. They took her to hospitals. Doctors were able to diagnose thalassemia in her when she was six-year-old.  She has been undergoing thalassemia treatment since then. Growing up with the condition was a hurting experience for her . As a child she did know about her plight.  She had to go to the hospital with her father and mother for regular blood transfusions.

Then, she got used to the routine and  regimen. Now, in addition to a monthly blood transfusion, every night she has to use her desferal pump.

In the morning she disconnects her desferal pump and gets ready for the day. She keeps herself busy by teaching  children at home. Blood transfusions, doctors’ appointments, and daily desferal injections take a lot of time and frustrate her. If she does not get the required amount of blood, her eyes and face become pale, she gets headaches, spells of fatigue and loses her appetite. She treats each day as a gift. Despite her sharp awareness of the fragility of her life, she has her own hopes and dreams. She is a vibrant girl despite her constant exposure to the disease. Our young woman has an intense desire and appreciation for living and health. She treasures the sacrifices her parents and the members of her family have made for her. She is particularly concerned about her being a burden on her father. She tries to live positively despite her problems. But, her greatest stress is the rising costs in health care. Her medical bills seem to exceed her father's income.                                                                                                                               

The latter is a labourer. He used to deal in watches when Mehro was a child. Her disease affected his business as well. Caring for Mehro took a lot of money and time. Therefore, he could not pursue his venture.  He has been bearing the expenses of her treatment for the last sixteen years. Now he is a labourer nearing old age. He expresses his helplessness against the costly treatment and laments that he is no longer in a position to bear the expenses of this high maintenance disease. Actually, it is not the disease that worries him, but it is his growing inability to support the treatment that gnaws at him. He has to spend enormous amounts of money on her treatment every month.                                               

They have been to various NGOs, state-run institutes and hospitals, but could not get free medical services or healthcare coverage or government aid for her treatment. After the story, I began to wonder,  'How are thalassemia patients, who are born in poor families, going to survive if they are unable to get any support from the government or NGOs  for the treatment?  The family is caught in a dilemma which is getting worse day by day. They have to fight single-handedly against not only thalassemia of his daughter but also against the atrocious and aggressive inflation in the country. The poor man is need of hands that can support him in this fight. I was overwhelmed and moved by their story.

Later on I contacted the hospital authorities and asked about Mehro's profile and report . The person on the other end told me that her health was declining due to reduced amounts of blood transfusions she was taking on account of  her limited resources. He made alarming conclusions . I was overwhelmed and moved at the sad news. 'Will she gradually wither away.....another precious life...in a few...years ?', 'How can we stop it? ', I began to think. It struck me that I should  round off  her pathetic tale with  the family's joint bank account,  in case some readers would be interested in extending donations to the needy patient. The details of the bank account are given below:

Account Title:  Mr Masood Ahmad & Musarat Shaheen

Name of the Bank: Habib Bank Limited, Pakistan

Account No: 01487900209603

OR, actually better, send your Bitcoin donation to:

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