The lacuna

Mithali was only eight months old when she got diagnosed with Thalassaemia major. Hailing from a remote town in India, she often had to commute staggering hours for her treatment. As part of her treatment, Mithali had to undergo regular blood transfusions every two-three weeks. This had become an interminable routine for her, and such monotony made her feel unmoored. At school, she felt different from others and couldn’t find time for her peers or education due to appointments. This continued as she grew older, impacting her employment opportunities. Her disease had imbued her with melancholy and anxiety for the uncertain future. Her treatment only served as a poignant reminder of her isolation from the “normality” she so dearly craved. Such arbitrariness had ruthlessly invaded her life, and she had no option but to capitulate.

“Mithali” might not be a real person, but her story resonates with many. Thalassaemia affects millions across the world, and yet it remains relatively underrepresented. In India, over four million individuals suffer from this disease. Exonerating the world from Thalassaemia certainly isn’t as insurmountable as it sounds, with the greatest adversary only being a stark lack of awareness and precautionary measures. This article attempts to explore not only the underlying medical problem but also the unsolicited side effects that come with it.

Patently, living with Thalassaemia certainly isn’t ideal. Apart from the physical complications (such as being prone to heart-related problems, iron overload, and infection), it becomes important to acknowledge the psychological impact. Patients with Thalassaemia often suffer from depression or some sort of anxiety. Denial, decreasing self-esteem, isolation, helplessness, frustration, and somatisation are common distresses in the patients amongst others. It’s only fair to note that the treatment might not be easy and tranquil for everyone. Frustration can stem from the need for regular blood transfusions, body image disorders, lower life expectancy, being treated differently and having to take regular leaves. Chelation therapy, itself, isn’t plain sailing. For some patients, having to commute regularly for their treatment isn’t feasible, not to mention the high costs in certain places.

Psychological problems might not be the most important for Thalassaemia patients, but they certainly burden the prodigious amount of physical as well as socio-economic challenges. 

Destiny is crafty, and it certainly was in Partth Thakur’s case. His parents had undergone a series of tests, including the test for Thalassaemia which came out negative. After three months, Partth was diagnosed with Thalassaemia major. At the age of 19, he started his own NGO- The Wishing Factory. The organisation works with young and underprivileged Thalassaemia patients and aims to improve their overall quality of life. Partth started wellness centres and blood transfusion centres across the country, along with awareness campaigns and talks at colleges. Wishing Factory’s Thalassaemia wellness centres provide patients with affordable healthcare facilities, essential in helping those from economically backward sections. During COVID-19, Partth launched the campaign ‘Ulta Hoke Thalassaemia Roke’ which funded the blood transfusion of 100 patients belonging to low-income groups. Their group-effort has been significant in making “Thalassaemia Mukt Bharat” feasible by encouraging screening tests and blood donations. Organisations like TWF corroborate that there is hope, and that it’s not elusive anymore.