Lalitpur, January 29
There were 20 recorded cases of children dying from thalassemia in the country last year. However, the actual death toll might have been much higher, given the lack of awareness about this genetic blood disorder and high chances of wrong diagnoses.
Thalassemia is an inherited blood disorder in which the body makes an abnormal form of haemoglobin, a protein in the red blood cells that carries oxygen.
The disorder results in excessive destruction of red blood cells, causing anaemia. Chances of inheriting the disease increase if both parents are carriers of the disease.
At the ‘Thalassemia awareness and orientation programme’ organised by Nepal Cancer Hospital and Research Centre, Lalitpur, Dr Ajit Rayamajhi, director of Kanti Children’s Hospital, said the general public was unaware about the disease.
This means the actual number of those who died of thalassemia is much higher than what is recorded. He said, “Symptoms of the disease manifest from early childhood, that is after the infants reach three to four months of age.”
The disease exhibits symptoms such as fussiness, paleness, frequent infections, poor appetite, failure to thrive, jaundice, and enlarged organs. “If untreated, children with this condition can develop heart problems, resulting in death,” informed Dr Rayamajhi.
“We did not know that we were carriers of this disorder. Six months after the birth of my first child, she fell very ill, and upon seeking treatment we found out that my husband and I both are carriers,”” said Sunita Lama. Her daughter Melina Lama, 13, is a patient of thalassemia and currently studying in Grade V.
“Melina must have one pound of blood transfused every two weeks,” Lama said. She also has to take medicines that cost nearly Rs 5,000 a month.
Another patient Chandra Raut has been getting blood transfusions for the last 12 years. Her parents took her to a hospital because of her poor appetite and yellowing skin, but they couldn’t diagnose her. Her parents had also resorted to taking her to a shaman in their desperation. “My daughter has been ill since she was five months old. We went to many doctors, but nobody could tell us what is wrong with her. She was finally diagnosed of thalassemia at a hospital in Biratnagar,” said Ram Dev Raut, Chandra’s father.
Nepal Thalassemia Society has recorded more than 1,820 thalassemia patients throughout the country. Around 500 patients are getting treatment, said Durga P Pathak, president of Nepal Thalassemia Society, at a thalassemia awareness and orientation programme. The society provides free blood transfusion to thalassemia patients.
A version of this article appears in print on January 30, 2017 of The Himalayan Times.