Report on Psychosocial Counseling Program of Sickle Cell Anemia.

May 13, 2025

Introduction:

The Rural Women Development Centre-RWDC (Gramin Mahila Utthan Kendra) is a purely social organization. In line with its vision of creating a self-reliant and empowered society, the organization has been conducting various programs in the community focused on income generation, disaster management, good governance, education, agriculture and livelihood, health, and other sectors.

In this context, the organization, with the coordination of Aatmanirbhar laghubitta Bittiya Sanstha ltd, Lamahi Municipality, and Rapti Sonari Rural Municipality, and with the support of MetLife Nepal, organized a free Sickle Cell Anemia Screening Health Camp to identify cases of sickle cell anemia, a disease prevalent in Tharu communities in the districts of Dang, Banke, Bardiya, Kailali, and Kanchanpur—regions with a majority Tharu population.

The free camps of sickle cell screening were held on 30 December 2024 at Satbariya, Ward No. 8 of Lamahi Municipality, Dang and on 31 December 2024 at the Health Post of Fattepur, Ward No. 7 of Rapti Sonari Rural Municipality. A total of 1195 individuals received services during these camps, and 155 individuals were identified as sickle cell patients.

To ensure the successful operation of the camps, meetings were conducted with the concerned stakeholders from the camp areas. Additionally, one-day orientation sessions were held for female community health volunteers, tole (neighborhood) leaders, community leaders, intellectuals, and elected representatives.

1. Psychosocial Counseling Program for Sickle Cell Affected Individuals at Fatehapur Banke.

A psychosocial counseling program for individuals affected by sickle cell disease was organized by RWDC Dang on May 7, 2025 at Fattepur, Rapti Sonari Rural Municipality Ward No. 7, Banke District.

In the program, Usha Oli, a psychosocial counselor from Bheri Hospital, facilitated sessions on various topics such as an orientation about sickle cell disease, precautions and measures that sickle cell patients should take, and the services and facilities provided by the government for sickle cell patients.

She informed participants that this disease, which is highly prevalent among the Tharu community, is characterized by symptoms such as anemia due to a low blood count, jaundice, severe pain in limbs, and recurring fever. She emphasized the importance of visiting a doctor immediately for check-ups if such symptoms occur.

Furthermore, after 77 individuals were found positive through the camp, she urged all family members of the affected households to get tested for sickle cell anemia at least once.

In-charge of Fattepur Health Post, Manoj Kumar Mishra, presented examples showing how Sickle Cell a type of hereditary disease mostly found in the Tharu community, has led to significant loss of life and property due to lack of timely diagnosis. He shared this information during a free Sickle Cell screening camp organized by the RWDC on December 31, 2024. During the screening of 621 individuals, 77 tested positive. Among those who tested positive, further hospital reports categorized them into patients, carriers, and those with thalassemia. Mishra also provided detailed information about the precautions that these individuals need to take in the future.

Additionally, Mishra advised that unmarried youths should use marriage compatibility tests (known as “bibaha kundali”) before marriage, especially to prevent hereditary disease transmission, and he clarified the concept of such compatibility checks.

Speaking at the program, Aasmani Chaudhary, Chairperson of the RWDC, mentioned that the organization was established with the vision of creating a self-reliant and empowered society. She stated that the organization has been conducting a variety of community-based programs focused on women’s income generation, self-reliance, empowerment, agriculture, good governance and health. She further informed that free Sickle Cell screening camps have been conducted in Dang and Banke districts.

She emphasized that the 77 affected individuals identified through the camp will, in the future, be included in skill-based training programs that are physically suitable and not burdensome to their health. These programs aim to connect them with income-generating opportunities. She also stated that the organization plans to provide scholarships to school-going children affected by Sickle Cell.

It was recalled that a similar program was organized last year in partnership with MetLife Nepal in Dang district, during which 41 individuals affected by sickle cell were identified. They were provided with various skill development trainings such as tailoring, beauty parlor services, commercial vegetable farming, proper management of livestock and resources, as well as scholarships. The program was inaugurated under the chairmanship of the organization’s chairperson, Asmani Chaudhary. The event was attended by the in-charge of Fattapur Health Post, sickle cell focal person Kalu

Ram Chaudhary, the chief of the livestock health division, and other officials of the organization.

The organization’s treasurer, Mira Chaudhary, delivered the welcome remarks and highlighted the objectives of the program. The program was facilitated by Information Officer Parbati Basnet.

2. Psychosocial Counseling Program for Sickle Cell Affected Individuals at Satbariya, Lamahi-7

The RWDC organized, a second psychosocial counseling session on May 11, 2025 at Lamahi Municipality Ward No. 7, Captain Ganj, for individuals affected by sickle cell disease.

The program began under the chairmanship of Aasmani Chaudhary. Ujjwal Paudel, the Technical Chief of Dang District Health Office and the focal person for sickle cell, facilitated the session by providing psychosocial counseling and teaching techniques to uplift the morale of those affected by sickle cell.

During the program, Paudel explained interactively what sickle cell is, how the disease spreads, what precautions should be taken to prevent it, and what aspects sickle cell patients should be mindful of.

While facilitating the program, Paudel also informed the participants about the importance of astrological compatibility (marital horoscopes) for youths affected by sickle cell, emphasizing its necessity before marriage.

Since most sickle cell patients experience problems such as anemia, jaundice, joint pain in hands and feet, and recurring fevers, they were requested to drink a sufficient amount of clean water compared to the general population. Similarly, everyone was also urged to pay special attention to their diet, including the consumption of organic fruits and green vegetables.

It was mentioned that marriage compatibility (horoscope matching) is an extremely important tool for the control of this disease, which is particularly prevalent among the Tharu community. Patients were informed that the government provides up to NPR 100,000 for medication expenses for those affected by sickle cell disease. Therefore, they were urged to bring their reports and obtain a recommendation letter from their respective wards. Additionally, if unbearable pain or suffering occurs, patients were strongly advised to immediately consult a doctor for a check-up.

After conducting a group orientation for all the sickle cell-affected individuals, Mr. Paudel formed groups of six participants and provided psychosocial counseling through each group.

Speaking at the program with financial support from MetLife Nepal and coordination from Dipan Social Entrepreneur Women’s Cooperative Ltd.—the Chairperson of the RWDC, Aasmani Chaudhary, shared that the institution was established with the vision of creating a self-reliant and empowered society. She stated that the organization has been undertaking various community-level activities to empower women in all areas.

Among the diverse fields in which the organization works, health is a very complex, sensitive, and crucial issue due to its direct impact on women, the hidden nature of gender-based violence, and the community and family’s differing perceptions of women’s health. Since last year, with support from MetLife Nepal, the RWDC has been working to identify sickle cell disease within the Tharu community through camps. Following that, psychosocial counseling and skill-based trainings have been provided to help the affected individuals become self-reliant. These efforts have also succeeded in making the government more aware of its responsibilities.

This year, the organization has conducted free sickle cell screening camps in Dang and Banke districts. Among the 574 individuals tested, 78 were found to be affected. The organization stated that in the coming days, these individuals will be connected to income-generating programs through various initiatives. Additionally, there is a plan to provide scholarships to children studying in schools.

The program began with a welcome speech by Ms. Laxmi Chaudhary, Vice-Chairperson of Dipan Social Entrepreneur Women Cooperative Ltd. The institutional presentation was delivered by Ms. Mira Chaudhary, and the event was facilitated by Information Officer Ms. Parbati Basnet. The program was also attended by teachers, female community health volunteers, and local community leaders.

Problems:

1. Those affected by sickle cell disease were afraid to attend the program even after being informed.

2. Sickle cell reports did not arrive on time.

3. Despite stakeholders assuring that they would work on this issue, they were unable to organize programs.

Achievements:

1. Stakeholder agencies became aware of the need to do something for people affected by sickle cell disease.

2. The affected individuals and their families became aware about controlling sickle cell disease.

Glimpses of the sickle cell programs .