Rashmi Rekha Das
A bunch of budding doctors are organising a first-of-its-kind
workshop on thalassaemia and haemophilia in Balasore with the objective of
serving BPL patients and plugging loopholes in the decrepit healthcare system
Modern medicine has been a great boon for humanity. It has resulted in the prolongation of human life and the discovery of vital medicines to combat lethal diseases. Before the dawn of modern medicine life was short and afflicted with diseases and torments. After medical practice transformed into an organised profession, humans experienced significant improvement in the quality of life.
Aided by modern scientific innovation the boundaries of medical technology have extended beyond imaginable limits. But despite technological innovation, doctors are as essential in society as they always were; their stature remains undiminished. They are still looked upon as saviours and, in some cases, even the Almighty in human form. Doctors are bound by the Hippocratic Oath and are committed to serving society in times of crises and pestilence. A handful of medical students, engaged in arranging free health camps and blood donation camps, are organising a first-of-its-kind health awareness-cum-workshop on thalassaemia and haemophilia scheduled to start at Satya Sai Engineering College in Balasore, May 28. The budding doctors are inspired by the ideal of service to society. The three-day event will be attended by acclaimed doctors from different parts of the country. Besides, social workers and students will participate in the event which focuses on people living below the poverty line. BPL patients suffering from thalassaemia and haemophilia will be provided free health check-up with minimum charges. Although many medical graduates are part of the workshop, Cognation, organised under the banner of the All India Medical Students’ Association, the contribution of especially three students has been remarkable.
President of the All India Medical Students’ Association, Orissa Chapter, Abhijit Upapadhya said, “Thalassaemia is passed from parents to children and is the most common inherited blood disorder in the world. It is caused by changes in the genes for haemoglobin. Haemoglobin is a protein in red blood cells that carries oxygen around the body. Changes affecting haemoglobin result in severe anaemia.”
“There are 444 million children in India below 18 years of age afflicted with the disease which is 37 per cent of the total population, according to Census 2011. Every 4 out of 5 children are anemic (NFHS). One out of 20 children admitted to hospitals has a genetic disorder that ultimately accounts for about 1 out of 10 childhood deaths. Approximately 30 per cent of children with haemoglobinopathies don’t live to see their 5th birthday. Keeping these facts in mind, we have decided to organise the workshop. It will work as a motivation camp for the patients. Approximately 670 thalassaemia and 200 haemophilia patients are registered in Balasore and the adjacent rural areas,” said Abhijit.
“Thalassaemia can affect people of any nationality, but it is particularly common in the Mediterranean and across a broad region extending through India, the Middle East and Asia. Thalassaemia is usually diagnosed within the first six months of life and can be fatal in early childhood. In the human body, red blood cells contain haemoglobin, made up of protein chains called alpha-globin and beta-globin. In thalassaemia, there is problem in the formation of alpha-globin or beta-globin chains,” said Abhijit, adding that this leads to red blood cells not being formed properly to carry oxygen. “Thalassaemia occurs when these protein chains are not formed properly because of missing or altered genes,” he explained.
Dr J S Arora, general secretary of National Thalassemia Welfare Society; Dr Ved Prakash Choudhry, senior consultant, haematology, and former professor of haematology, AIIMS, New Delhi; Mukesh Garodia, vice president of Haemophilia Federation of India; Dr Prosanto Kumar Chowdhury; Dr Provash C Sadhukhan; and Dr Amit Banerjee are among the 15 dignitaries invited to the workshop who would point out ways to fight the disease. The three-day workshop will feature 30 events and witness the participation of around 30 colleges. Around 150 doctors, 300 students and 600 patients are expected to attend the programme.
According to Abhisek Routray, fourth year student of Rourkela-based Hi-tech Medical College, “Every year May 8 is observed as Thalassaemia Day. It is estimated that nearly 1 lakh Indians suffer from the dreaded disease, with more than 8,000 thalassaemic births recorded every year. Balasore district is the thalassaemia belt of Orissa. That is why we decided to hold the workshop in Balasore.”
“Thalassemia is a hereditary blood disorder wherein the patient has to undergo repeated blood transfusions as the body cannot produce enough haemoglobin. The problems for a thalassaemic’s family are compounded by the fact that repeated blood transfusions lead to accumulation of excessive iron in the heart, liver and other vital organs causing iron overload. Film stars Amitabh Bachchan and Amisha Patel are thalassaemic. So are retired French footballer Zinedine Zidane and former tennis star Pete Sampras. All of them have a genetic blood disorder and must remain under treatment for life”, he added.
Asked about Cognation, Abhisek said: “The man behind the workshop is the founder of the All India Medical Students’ Association, Dr Jitendra Singh. He advises medical students to serve people. Inspired by him, Abhijit Upapadhya decided to launch the Orissa Chapter of the All India Medical Students’ Association, November 13, 2016. Manas Das and Abhijit along with me are the initiators of the group.”
Subhashree Mallick, another active member of the students’ wing, said, “Our workshop is based on challenging and maintaining haemoglobin in thalassaemia, monitoring thalassaemia, status of haemophilia in India, management of haemophilia, transfusion transmitted infections, gene therapy and bone marrow transplantation. Despite repeated efforts, there still exists a communication gap between patients and the healthcare system. The workshop intends to focus on the problems faced by patients.”
“Lack of awareness and improper counselling have led to increasing cases of thalassaemia being reported from the state. The workshop will benefit patients by drawing up a clear picture of treatment modalities and help in formulating a policy framework to combat the diseases,” added Subhashree.
