Anupa Chaudhary of Tikapur–7, Kailali, has been living with sickle cell thalassemia for many years and has faced numerous challenges since childhood. Although she grew up in a financially stable family, she suffered from recurring health problems from an early age. Her family sought treatment at various places, but her condition remained undiagnosed. It was only after meeting Dr. Rajan Pandey, a consultant physician at Bheri Hospital in Nepalgunj and an expert involved in developing clinical protocols for sickle cell anemia, that she was diagnosed with sickle cell thalassemia and began receiving proper treatment.
Because she requires regular blood transfusions and frequent hospital stays, Anupa has endured significant mental stress over the years. “At first, it was very difficult to determine what illness I had. Since my father was a teacher, he would take me to India whenever I had health problems,” she recalls. “My frequent illnesses caused great stress for my family as well. Even after years of treatment in India, my disease had not been identified. It was only after meeting Dr. Pandey that I finally received a diagnosis.”
Afterward, she began receiving treatment at Seti Zonal Hospital and Bheri Hospital in Nepalgunj, bringing some relief to her family. “Whenever I experience pain, it affects my bones and joints, back, waist, chest, stomach, fingers, and toes. My shoulders, knees, and heels can become unbearably painful,” she says. “This happens during a sickle cell crisis, and when it does, we immediately go to the hospital. Patients like us need supportive families.”
Fortunately, Anupa has a supportive husband who understands her condition. Despite knowing that she had sickle cell thalassemia, he chose to marry her. The couple is currently consulting doctors about having children. “I told him that I was ill and that any children I had might also inherit the disease, and suggested we should not marry,” Anupa recalls. “But he told me he loved me, would support me, and wanted to marry me. After discussions with my family, we got married.”
Having grown stronger through years of illness and hardship, Anupa now counsels and encourages other people living with sickle cell disease. According to medical experts, if a mother has sickle cell thalassemia and the father is completely healthy, there is a possibility that their child will be born free of the disease.
“A child may inherit an abnormal gene from the mother, so some children may become carriers,” says Dr. Saroj Khanal, an MD physician at Tikapur Hospital. “Being a carrier does not cause health problems, but if a child develops the disease, regular treatment is necessary.”
Another patient, Lal Bahadur Chaudhary, Chairperson of the Tikapur Municipal Sickle Cell Committee, recalls enjoying a vibrant social life during his youth. He frequently gathered with friends and participated in communal meals and celebrations. In 2015 , he became seriously ill. Despite seeking treatment at several hospitals, his condition did not improve. It was only after traveling to Nepalgunj for treatment that he learned he had sickle cell thalassemia.
After his diagnosis, friends who once shared meals with him began distancing themselves. Some even mistreated him. The discrimination and social isolation became so severe that Lal Bahadur attempted suicide three times.
“At that time, people treated sickle cell patients like criminals. They blamed us for our illness,” he says. “I never thought I would survive. Having to be hospitalized every month made me feel like ending my life. I developed mental health problems.”
During one of his most difficult periods, a close friend noticed his physical and emotional decline and offered support and encouragement. With that help, he gradually recovered and is now a prominent advocate for sickle cell patients.
“My goal in life now is to ensure that no one experiences the kind of mental stress I went through,” he says. “The disease broke me down, but after overcoming it, I became an activist.”
After enduring years of suffering, Lal Bahadur realized that patients needed to organize and support one another. He helped establish the Tikapur Sickle Cell Committee, which brought together many people facing similar challenges. The committee holds meetings, provides psychosocial counseling, supports treatment efforts, and assists patients in accessing healthcare services.
Today, Lal Bahadur spends his time counseling patients, informing them about treatment procedures, helping those who cannot travel to hospitals, and facilitating consultations with doctors.
More than 300 people in Tikapur have been identified with sickle cell disease or related conditions. To improve diagnosis and treatment, the municipality launched a Sickle Cell Urban Health Promotion and Sickle Cell Center this year. Tikapur is the first local government in Kailali to establish a dedicated treatment center for the disease.
According to Tikapur Public Health Inspector Kewal Singh Sarki, health screenings of around 2,000 residents identified more than 300 affected individuals. Among them, 80 have severe forms of the disease, including sickle cell thalassemia, while the remainder are carriers.
“A few days ago, the municipality conducted health screenings for 1,000 students, and the results are still pending,” he says. “This disease, which is more common among the Tharu community, has been detected in about 15 percent of those tested.”
Sarki says the municipality is working to improve diagnosis and treatment services and is also helping patients access free health insurance. Lalbir Chaudhary, Coordinator of the Tikapur Municipality Social Development Committee, says that because sickle cell disease is more prevalent among the Tharu community, the municipality has prioritized the issue by establishing a dedicated treatment center and supporting patients through health insurance and other initiatives.
“Based on the demands of affected individuals, we have been implementing additional programs and are planning income-generating initiatives that patients can participate in from home,” he says. “When one family member is ill, the entire family is affected. Therefore, we are also working to raise awareness about ways to prevent and manage this disease in the future.”