Sickle cell anemia a painful inheritance for tribals

COIMBATORE: V Bagyaraj, a native of Banagudi hamlet in Kothagiri taluk in Nilgiris wakes up every morning wondering whether it is going to be a good or bad day. If he is lucky, he might go for a walk in the forest or play cricket. Else, he is confined to bed, suffering from acute pain. He is one among several tribal children suffering from sickle cell anemia (SCD).The disease is hereditary. To a certain extent, it can be prevented but it can never be cured. His fate has been sealed for life.
Until two years ago, when the Nilgiris Adivasi Welfare Association (NAWA) began treating him to manage the disease, he used to spend every single day in bed, writhing in pain. He looked emaciated, pale and much younger than his age. He is much healthier now, thanks to NAWA which supplies him with pain medication and hospitalizes him when the pain becomes unbearable. “When my body hurts, I cannot move,” he says. Having lost his parents, he lives with his grandmother.
Sickle cell anemia is a serious disorder in which the body makes sickle-shaped red blood cells. “Sickle cells contain abnormal hemoglobin called sickle hemoglobin which causes cells to develop a sickle, or crescent, shape. Sickle cells are stiff and sticky. They tend to block blood flow in the blood vessels of limbs and organs. This leads to pain, infection and organ damage.
Twelve-year-old R Kanakraj, part of the Irula tribe residing in Sundapatti hamlet, also suffers from SCD. “I enjoy playing cricket and volleyball but often I cannot enjoy sports because my knees and hands pain a lot. Occasionally, my chest pains too. Earlier, I hardly went to school because of the pain. Now, I am more regular since the association gives me pain killers,” he said.
According to a study conducted by NAWA over the last four years, out of a total tribal population of 6260 in the Kothagiri block, 41 were identified with SCD, while 1077 were identified with sickle cell traits, said K Vijaykumar, project manager, NAWA. Out of those exhibiting the trait, 478 were male and 579 were female, while 16 males and 25 females had the disease. The most affected age group was between 16 and 40 years, he added. The Irula and Kurumba were the most affected tribes while the Todas and Badagas were found to be susceptible to the disease. The disease is prevalent among other tribes too.
M Alwas, secretary, NAWA, urged the government to play a substantial role in curbing the disease. “The government should identify persons with SCD and ensure that they do not marry as their offspring will most likely have the disease. At present, they get funds from the government to treat people with the disease, but Alwas says that this is hardly enough to wipe out the disease. Sufferers should receive financial help from the government, he added since most cannot work. He also suggested that people with the disease should receive their pension earlier as their life-expectancy is short.