Thalassemia this word is as common as cancer, we understand the pain and the emotions behind cancer, the fear of losing our loved ones almost never leaves our eyes, no stone is left unturned to steer them from death to life, and when you lay your head against their chest and hear the heart beat rhythmically a tear escapes the eyes thanking the wonderful inventions of science. How many of us think about thalassemia in the same way? Many of us know that thalassemia is a blood disorder, however, none except the families who are facing it, children who have this disorder, social workers and doctors who are dedicated passionately can feel the anguish and social ostracism associated with thalassemia.
Six months after birth, the symptoms of the disease appear, sometimes as early as 4 months, the common symptoms are poor feeding, developmental delay, constant crying, infections, pallor, enlarged spleen and liver. Many families have lost their babies due to poor diagnosis and due to lack of awareness among health workers and the general population. Detection of the disorder in time and adequate treatment gives the child the right to normal development and to lead a quality life as close to normal as possible, however, a majority of them have been inadequately treated or have not been treated at all. Those who have not been treated at all do not even live to see their first b'day, those with inadequate treatment have severe developmental disorders, such as stunted growth, enlarged heads, flattened nasal bridge, malocclusion and are devoid of secondary sexual characteristics. Well, these are not the only problems associated with thalassemics, they have their own set of psychological problems as well, many of them feel left out from children who lead normal lives. They are confused as to why they need transfusions and not them, many a times these children don't turn up for transfusions Thalassemic teenagers hesitate to tell their peers about their condition as they fear being left out, parents hesitate to tell the teachers for the fear of their child being left out from normal activities. A lot of thalassemic children drop out of school or have not attended school at all, this is due to the fact that there is very little awareness about this disorder, many parents feel that the life span of thalassemics is short and that they need not burden them with books and studies, it takes a lot of motivation to make them realise the importance of education and how their children can lead near normal lives with adequate treatment.
In families where thalassemic children have normal siblings, the feeling that their normal counterpart is getting more attention and love is a difficult situation to tackle, for though they may be getting the same treatment, many children feel neglected as most parents keep high expectations from the normal sibling and have little or no expectations from their thalassemic child. Some families have kept this disorder under wraps from relatives and their social circle for the fear of being socially ostrcized and the "bahu" for bringing ill luck to the family.
Every child has a poignant story to tell, the more you hear the more does your heart want to do extend some sought of help towards them. For me too, thalassemia was just another blood disorder until I embarked on the journey and personally saw the plight of these children. I recall a child who was abandoned by her father, who told her mother that she should let the child die if she wanted the marriage to work out, we cannot comprehend the grief of this young mother who at a young age of 25 chose to nurture her ailing child and put her marriage on the pyre, her retired father supports both of them, it was when he removed a crinkled Rs. 500 note to pay for the medicines that my eyes welled up and I was choked with emotions unable to utter a word. This is just one story, if one was to write about every thalassemic child there would be volumes. Every story has a similar background some a little better some worse. Although India has a very high prevalence of thalassemia with incidence increasing every year, the general population is totally unaware about this debilitating disease!
There are about 25 million carriers of beta thalassemia genes in India and over 9000 children with thalassemia major are born every year. The main stay of supportive treatment for thalassemia major children is monthly blood transfusion along with iron chelating therapy. Hematopoietic stem cell transplant is the only curative therapy so far which costs around one million rupees which only a few can afford. The cost of optimal transfusion and chelation treatment in India is Rs. 125,000 per year which only 10-15% can afford. The huge financial burden makes the poor shy away from treatment, which in turn leads to death of the child and the birth of another thalassemic child who would meet the same fate! This is a vicious cycle and one can only come out of it if the financial burden is shared by the financially more blessed ones. Also proper awareness must be circulated among the people as prevention is the best cure.
- by Dr Jolly Benjamin
Medical Officer In-charge
“Project Samraksha” the Thalassemia Day Care at Rashtrotthana Parishat