Durgapur Society For Thalassemia: Volunteer Work
“More than 10,000 kids with thalassemia are born in the country every year just because there is not enough awareness among couples who are getting married.”
Mediterranean anemia, or Cooley’s Anemia, commonly known as, Thalassemia is an autosomal recessive disorder. You can know all about it here. Despite the motto, “Prevention is better than cure”, we have seen a drastic increase in genetic disorders over the past few years. Is it because of mutation, or the simple fact that organisms evolve?
A noble and chaste approach has been taken by some retired members of SAIL (Steel Authority of India Limited) to help those who are less fortunate. Some notable members are Gopranjan Basu and Ardhendu Dakshi. This organisation provide every kind of help to people with thalassemia, be it medical treatment, shelter, or a hand to help when in need. All treatments are free of cost.
On 22nd May, I volunteered help to spread awareness among people and also enrich my knowledge about Thalassemia. Until then, all that I knew about it were from books and internet. Having a first hand experience in interacting with people suffering from it proved to be enriching, not only in medical terms, but also as a social one.
There was this little boy sitting with his mother on a bed in the far left corner. He was lean, and had innocence etched across his face. It was hard to imagine picturing him with deformed red blood cells; he looked normal. That time, my mind wondered upon society’s reluctance to accept people like him.
Upon striking up a conversation with his mother, I found out that he was diagonised with Thalassemia three years back through a blood test. “He always used to have loose motion and fever from childhood,” she said. After many futile efforts to point out what was wrong, the blood test confirmed that he was a Thalassemia patient. That meant that both of the parents had to be carriers, Thalassemia being a autosomal recessive trait.
“When his father found out about it, he didn’t accept us,” she reminisced, “My in-laws isolated us, and ever since, I have been raising him on my own.”
I looked down at that little boy and asked his name, “Rupanjan Thakur,” he informed me. Underneath the innocent face, there was a hint of strong courage. His disease was not his fault, yet he had to pay for it in strange ways.
I also got acquainted with a 17 year old girl. “I want to be a teacher,” she said, with a smile when I asked her what she wanted to become. She was diagonised with Thalassemia since she was four months old. Regular blood transfusions (with an interval of 22-25 days) have been a major part of her life ever since.
What pained me most was to see that almost every of those patient present there were regular children. They were like me and you. If you walked past them in the playground, you would never get the feeling that they are carrying this huge burden on their tiny frail shoulders. There is only one question amidst this all: Whom should we blame for this? Or, should we blame anyone, at all? The only way to prevent this is to repeat the age old mantra: Test your blood before marriage. If you are indeed a carrier, don’t worry. With the advancement of technology there is an option for everyone to live their lives. What we need to do is broaden our minds and reach out for these kids with welcoming arms.
Some common recurring symptoms among these kids are excessive weight loss, degrading haemoglobin count and hyperacidity. This disease mainly shows itself in the first few years after the child is born, and if your child shows the first early signs (read about them here), don’t delay or hesitate. Do a blood test immediately.
Their treatment is done by Dr. Prosanto Kumar Chowdhury( PGD, Haemoglobinopathy) and Professor Anupam Basu (PhD, Molecular biolgy and human genetics researcher).
One of the primary aspects of treatment includes maintenance of haemoglobin count upto 9 and proper weight, and regular blood transfusion (as per my observation).
So, if you know of someone, or if you have someone who is fighting for his/her life every day, don’t hold yourself back. Step up and raise your voice. Do whatever you can to help them, even if it is a small gesture.
Anyone wanting to volunteer in any form, be it putting in a day’s work, or donating for their welfare, or campaigning for their cause, please contact the number given below:
+919434475891, +919434476138, 0343-2573344
Address: Room number: 3,4,5, A2 Health centre, Durgapur- 713204.