Nepal Health Research Council has been conducting the study of status and effects of Sickle Cell Anemia (SCA) prevalent among the Thaurus in Barbardia Municipality of Bardiya district, housing the highest Tharu population in the country.
This lifelong hereditary disease is a group of red blood cells disorders that affects haemoglobin, the molecule in red blood cells throughout the body.
Tharu population constitutes 52 per cent of Bardiya's total 384,649 population, according to the latest census in 2011.
Research Officer Shristi Priya Darshini informed, "We are conducting a research on SCA and its affects and we are confident that the finding would be very useful in reducing the number of deaths from the SCA."
The latest census in 2011 puts the population of Tharus at 1,703,700 among whom 56 per cent were residing in Bardiya. Barbadia in Bardia district houses the highest number of Tharus.
A team of researchers coordinated by Council's Executive Chairperson Dr Anjani Kumar Jha began the research since April this year. Of the 20,000 sampled targeted to collect, the technical experts have so far collected around 13,000 of them. The sample would be later tested in Kathmandu-based Bir Hospital.
The research is focused on people from 1-29 years age group. The mortality rate of SCA is found highest children from age 1-5.
Researcher Priya Darshani explained, "If the baby in womb is found to have infected SCA through DNA test, parents still had a choice for abortion. "Otherwise", she cautioned, "Timely precaution should be observed during and after the delivery of the baby."
The research would aid in identifying the disease and could offer consultations to the affected ones for them to elongate their lives. Dr Shyam Kumar BK shared that consultation to the SCA-patients have been offered simultaneously while carrying on the research.
Non-Tharu too affected with SCA
Research has found that this disease was not only found among the Tharus but also in people from other caste and communities.
The Council denies the general assumption about the SCA that the Tharus only inherit SCA and said that people from other caste and communities were also identified having SCA but the majority of the SCA-patients are the Tharus.
SCA is not only severe and chronic but also fatal when the vital organs and nerves of the SCA-patients could be damaged due to chronic deprivation of oxygen-rich blood.
A study showed that around 18 per cent of the Tharu community in the country were SCA-patients. Around 9-10 per cent of Non-Tharu were found to have inherited SCA.
Priya Darshini clarified, "It is a misleading information that SCA is only inherited by the Tharus. People from other caste and communities have also got SCA."
Studies conducted by the World Health Organization in 2007 showed the presence of the disease was found highly in Gujrat and Rajasthan and the United States of America as well beside in 45 per cent of the total population in Africa.
In the context of Nepal, the sickle cell cases are mostly found in Dang, Banke, and Bardiya. It a major health threat to the Tharu community in western Nepal. The Jha community of Rautahat is also vulnerable to SCA. However, there remains a less threat of this disease among the Tharu community in the eastern Nepal.
The Council claimed this is the first research in the country solely focused at the local level. Earlier such types of researches were limited to hospitals and universities.
The Council is awaiting the study report to know about the latest situation of this hereditary disease, according to Council deputy administration officer, Nirbhay Kumar Sharma.
Impact of SCA
The first case of SCA was found in Kapilvastu of Lumbini district. Body ache, bone pain, fatigue, and symptoms of anemia due to red blood deficiency are the early signs of SCA.
Sickle cell researcher Dr BK said as the disease is hereditary; there is no treatment for its cure across the world.
A new educational and counseling service campaign has been launched in the district for the mitigation of the risk of disease.
People with SCA are being advised to find a partner who does not have such issue and it helps control the transmission of this disease to offspring by 75 percent.
Other awareness raising programs are underway.
The government has included the course of SCA in the Social Studies subject in Bardiya with the support of the local government in a bid to raise awareness about it.
