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:
— 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:
— 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.
— Sickle Cell 101 (@sicklecell101) June 11, 2015