Sickle-Cell Disease Has Hit Nepal’s Tharu Indigenous Community Particularly Hard
Tharu lady with her cows in a Tharu village outside of Dhangadhi. Image by Flickr user Inhabitat. Used under a CC license BY-NC-ND 2.0
As the world celebrates World Sickle Cell Day on June 19, awareness of the disease remains low among a large portion of the Tharu indigenous people in Nepal, though many have lost their lives to it.
Pramod Neupane, a civil engineer, tweeted:
Sickle Cell disease in Tharu Communities is an inherited genetic disorder. Needs urgent attention http://t.co/ve6Y5GY9zD #Nepal #SickleCell
— Pramod Neupane (@friendycalls) June 23, 2014
Tharus, the fourth largest group in terms of population in Nepal, have a seven-fold lower prevalence of malaria than non-Tharus. Tharus have been living in the plains, which were infested with malaria for thousands of years.
Sickle cell has been found to be more prevalent in the malaria-affected areas, and the people with sickle-cell trait have been found to be more resistant to malaria.
Twitter profile Genetics and Beyond tweeted:
Why sicke cell anemia protects against malaria? http://t.co/K5ldQryYyU | #science #fact #GAB #erythrocytes pic.twitter.com/O1LBDLpUDy
— Genetics And Beyond (@GenesAndBeyond) March 23, 2015
What is sickle cell disease?
With the vast numbers of people diagnosed with sickle cell it is a surprise that not a lot of people are aware of it #SpeakOnSickleCellObama
— SickleGirl (@SickledGirl) June 12, 2015
Sickle-cell disease receives its name from the abnormally shaped red blood cells, like a sickle in appearance, that get stuck in the blood vessels. The disorder, which is inherited from parents, makes it difficult for the blood vessels to deliver oxygen to the body, causing intense pain and leading to complications like organ damage and stroke at times.
As the diagnosis and treatment of the disease is very expensive and not available at local health facilities in Nepal, many families have sold their land and properties to get treatment in neighboring India.
Last year, the government of Nepal announced free treatment for sickle-cell anaemia patients. However, the health facilities don’t have the necessary medical equipment and even for the diagnosis, blood samples are sent to India.
Awareness is crucial
Doctors say awareness is crucial to prevent sickle-cell disease. It is not contagious and people are born with the disorder. Since there is a 25 per cent chance that a child will have the disease if both parents carry the sickle-cell trait, it is advisable not to conduct marriage between people who share the trait.
Doctors have also advised the Tharu community to go for inter-caste marriages in the areas where the disease is prevalent to check the further spread.
Awareness is all we need, the rest will follow! #SpeakOnSickleCellObama for World #SickleCell Day 6/19 @POTUS @FLOTUS pic.twitter.com/XqMnWerW8N
— Sickle Cell 101 (@sicklecell101) June 11, 2015
