Whose curse has befallen this tribe?

Whose curse has befallen this tribe?

In honour of world Thalassemia Awareness Day

What is Thalassemia? It is a genetic blood disease that affects the haemoglobin in the blood. It destroys red blood cells and leads to anaemia. There are different types of thalassemia – major, minor, alpha and beta. People who live lives adjusted to this disease are required to have frequent blood transfusions.

India is the Thalassemia capital of the world, with over 10,000 cases of thalassemia major per year. Over 1 lakh people die annually due to a lack of access to medical care. The same amount of people undergo blood transfusions per month. And yet, so many people are unaware of this disease. Under lockdown, like many things, the donation of blood came to a halt. The blood banks, therefore, had limited supply to these critical patients, who depend on these transfusions to survive. Blood banks are now offering passes if you are a healthy person able to donate blood.

Feature: Totos of Totopara – on the brink of being wiped out by a rare blood disorder

During our recent educational travels in West Bengal, we learnt about the Toto tribe – amongst the smallest tribe in the world. We were also told that the average life expectancy for the members of this tribe is 50-55 years. The Telegraph reports that 49 per cent of school-aged and unmarried Totos between 2009 to 2012 were thalassemia carriers, and about 20 per cent of the 443 Totos tested were already experiencing complications from the disorder.

What’s more surprising is that the Totos are usually unaware that they have this disease. Seeking no modern-day medical help, the tribe attributes the deaths to a curse of evil power. The Totos are a close-knit tribe, they do not socialise or marry outside the tribe. This being a disease that is inherited, thus endangers the whole tribe.

Is there something we could do about this?

 

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