Addressing Health Inequalities Across the Global Thalassemia Community
There are many varieties of illnesses that can be unfolded, and Thalassemia Illness is one of them. Every year 8th May is observed as World Thalassemia Day. Thalassemia is a kind of blood dysfunction and the international observation on this day is to learn about this dysfunction, treatment, and preventive measures.
The human body has so many systems, and mechanisms and nature have the strength to keep them going. When the body does these functions efficiently day in and day out, humans take them for granted and burden them with worries in the name of achieving success and enhancing the quality of life. One experience’s best quality of life is to ensure the body functions in the best possible way, and when it is doing, recognize, acknowledge, and celebrate and add satisfaction. Conditions like Thalassemia remind humanity about so many unfinished jobs the tremendous and dedicated human minds must achieve and minimize the suffering if not eliminate them. The way the COVID pandemic is spreading and threatening the whole world and how the world has reacted collectively in finding vaccines and treatment gives us hope that if humanity forgets discrimination and not limit themselves to the geographical boundaries, solutions can be found.
Thalassemia is a disease of the blood in which there is increased destruction (haemolysis) of the red cells. Normal haemoglobin has four protein chains—two alpha-globin and two beta-globin. The two major types of Thalassemia, alpha and beta, are named after genetic defects in these protein chains. Beta Thalassemia is also referred to as Cooley’s anaemia after its founder Dr Thomas Cooley. The child born with thalassemia major has no symptoms of the disease after birth. As the child grows, the requirement of beta-globin increases and the symptoms of anaemia begin to appear within a few months after birth, usually when the child turns one year. As Thalassemia is a hereditary condition, it cannot be prevented entirely. The bone marrow transplant is a currently available method of treatment. Advances in medical science in gene therapy are emerging as a novel step that uses stem cells to produce healthier red blood cells and fix their blood disorder.
Historically, the defective gene originated from near the Mediterranean region, hence the name “thalas”, meaning sea. Worldwide, there are 270 million suffering from Thalassemia, with 300,000-400,000 babies born annually, with 90% of those births are in low- and middle-income countries. One in eight thalassemia carriers in India is described as the Thalassaemia capital of the world. Close to 1 lakh patients lose their life to the disease before they turn 20. National Thalassemia Welfare Society (NTWS) in India is making efforts to bring all the thalassemia societies to interact and work for the mutual benefits and common cause at the national level.
There are so many people out there suffering from Thalassemia, and they need our help. Stepping out to donate blood is a way of extending a helping hand. You are lucky that your body can replenish what you have donated within a short time. Celebrate the gift of your body’s capability to replenish by donating whenever you can readily.
Time for a global effort to make novel therapies accessible and affordable to patients.
Toons: Reema Jaiswal
Logs: Sai Baba
