Coping up with Thalassemia

Published On: October 8, 2018 06:45 AM NPT By: Sabita Shrestha

Presently, there is no cure available for this hereditary disease. 

CHITWAN, Oct 8:  Mahesh Chaudhari of Ratnanagar Municipality-8 was diagnosed with Thalassemia when he was just four-year old. Now he is 19 and studies in 12th grade. Managing time for studies as well as for regular visit to doctor has kept him in a fix since then. “It is not easy for my son,” says Chaudhari’s mother Ramkumari. “The disease, the name of which sounds alien has been a curse to us. He needs regular medical attention,” she added. 

Chaudhari needs blood transfusion three to four times a month. A little negligence in doing this affects his stamina right away. Before him, the disease was seen in his younger sister when she was just one-year old. She died at the age of eight. “I had three children. One of them succumbed to this disease, one is struggling with it and my youngest one is the only who has not caught it,” she said. 

The only available option for treating Thalassemia is blood transfusion but doing so over an extended period can also have side effects. Though available in developed countries, technology for minimizing the side effects is not available at the Bharatpur Hospital.

Thalassemia is blood related disease. The disorder leads to anemia and leaves the patient incapable of handling daily works sometimes. “My son feels very weak most of the times. He cannot even do normal work despite the ongoing treatment,” Ramkumari informed. 

Even though the family is doing its best for the treatment, things do not go the right way always. In hospital, there are no doctors at times. “Some other times, they say there is no blood and sometimes there is lack of bed,” lamented the mother. “It has been 15 years that he is being transfused blood regularly. But we fear about his future as we have already lost a daughter to the disease,” she added. 

The cost of the treatment has fallen so hard on the family that it no more has its own house. To pay for their son’s treatment, Ramkumari sold off the house and is now living in a rented house. “We are in a serious trouble. Do not know how to bring life to balance. Now we are living in a rented house, we had to sell of our house,” she said. 

Sanju Mahato of Basantapur, Madi is also facing the same problem. Her six-year-old son is also suffering from Thalassemia. He was diagnosed with the disease when he was two. “When he was two years old, he had diarrhea. We took him to doctor for checkup. The doctor told us that he was suffering from a serious disease,” reported Mahato. 

Since then, she has been taking her to hospital in every two week for blood transfusion. ‘There is no excuse. You have to visit hospital regularly’, Mahato lamented. 

According to Mahato, the boy’s health problem has put other aspects of life in a shadow and this has affected the entire family. 

“I cannot leave him alone even for a minute. He is a sick child and needs my regular attention and care. In every two weeks, we have to go to the hospital, which is very far. There are so many hassles at the hospital, which we have to tolerate. Sometimes, hospital staffs don’t care about us and we have to wait for a long time. At times, we even have to stay overnight at the hospital. There is no count of plights,” said the sad mom. 

Yet another case of the disease is that of the daughter of Bimala Chaudhari of Khairahani Municipality. Thalassemia has not spared her child either. “I feel extremely worried about her life. We don’t have enough money to continue with the treatment,” she lamented. 

Thalassemia patients get free treatment at the Bharatpur Hospital in Chitwan. However, this ‘free treatment’ consists of just ‘free blood’. “Other expenses are huge. Travel, food and medicines are very costly,” said Bimala. 

According to a doctor at the hospital, Yuvanidhi Basaula, the hospital is providing treatment to 71 Thalassemia patients and most of them are from the Tharu community. He states that just blood transfusion cannot help patients. “Only transfusing blood does not help much. But we don’t have other facilities here,” Dr Basaula said. “Regular blood transfusion over long period of them creates liver, heart related ailments,” he added. 

According to him, advanced treatment is available in developed countries. Treatments in developed countries try to reduce the side effects of blood transfusion. “If required, they can segregate extra iron from blood to be transfused. But here, we don’t have that technology,” he said. 

Stating that the disease has been found more commonly in Tharu community he stressed on the need for research into it. “The disease is common among Tharus. There must be some reason which needs to be researched,” he said. 

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