Mumbai: Imagine yourself undergoing painful procedures for blood transfusions aŌer every 10-15 days. Your forearms are marked with needle pricks and you gulp down loads of medicines day and night, all this just to keep yourself alive. It may have portrayed a frightening picture for you, but this is another day in the life of a thalassaemic major patient.
Thalassaemia is a genetic blood-impairing disorder, and changes in the genes reduce haemoglobin production – the oxygen-carrying molecule in blood– in the body. It leads to anaemia, major complications and then, untimely death. The severe effects of this disorder are seen only in thalassaemia major patients, while no symptoms occur in thalassaemia minor carriers.
You may question: why be aware of thalassaemia when we ourselves are not affected by it? The reason is: awareness is the only method to prevent it. In fact, India is known as the "Thalassemia Capital of the World" because it has over 40 million carriers of the genetic blood disorder, and more than 10,000 new cases are diagnosed annually, only because of unawareness. I am sure there may be many who will hear of thalassaemia for the first time through this very article.
What is to be noted is that “major” patients are born with a 25% chance only between two married thalassaemia minors. Not bearing any symptoms in minors is a good thing, but not knowing you are one can disastrously affect your next generation. I say “disastrous” because its treatment procedures bring great physical and mental pain to the paƟents, and do not have a feasible, affordable cure to it. Thus, it is of utmost importance to get yourself tested for thalassaemia minor and undergo genetic counselling before marriage to avoid going down this path.
On these lines, I would especially mention the efforts of Mrs. Sujata Raikar, the founder of SAATH: Support And Aid for Thalassaemia Healing. This philanthropist and TEDX speaker has vowed to spread awareness about this life-impairing disorder to the masses to eradicate it. SAATH adopts lifelong medical expenses of thalassaemic patients and provides counselling to their families. They also arrange blood donation camps occasionally to meet the dire need for blood for the patients. For the past 12 years, Mrs Raikar and her charitable trust have been relentlessly working to let the thalassaemic patients find hope in their ill-fated lives.
With this article, I hope I could contribute my bit towards SAATH Trust to make you all aware of this deadly disorder. By donating blood at least twice a year and getting tested, you can contribute to the cause and save countless lives.
