Indian children participate in a rally to highlight Thalassemia in Kolkata, India, in this 2013 file photo. In neighboring Sri Lanka, the highest concentration of Thalassemia patients has been recorded from Kurunegala district. (Photo by AFP)
Wasantha Jayasigha and his wife were not only heartbroken but also fearful of social stigma when they heard that their only child had thalassemia.
The farmers, both Buddhists, from Galgamuwa village in Kurunegala province, began blaming each other for the illness of their child and worried about what the neighbors would think.
It was "just by accident" that they heard of Caritas Kurunegala and its work for those with thalassemia.
The couple then joined Caritas' "Thalassemia project" and went regularly for counseling and learned about the disease and care for their child with treatment education and support.
Besides, their daily work as farmers, and taking their daughter once a month to the National Thalassemia Center of Teaching Hospital in Kurunegala for a blood transfusion, they are now ambassadors for the project and work to make others understand the disease, and share their experience on how to help affected children live a normal life.
Thalassemia, whose symptoms are invisible, is a noncurable genetic disorder in which the body produces abnormal hemoglobins that destroy red blood cells, thereby causing anemia. It is normally passed on from either one or both parents to children and can be diagnosed in the first two years.
Father Jamika Perera, diocesan director of Caritas Kurunegala, pointed out that since thalassemia is a genetic disorder, the best way to avoid having children born with the disease is "to avoid marriages between two thalassemia gene carriers."
Hence Caritas is working to make people aware of the nature and effect of the disease and the compulsory need to have a premarital blood test to avoid the possible birth of a thalassemia child.
According to the records of the country's health ministry over 5,000 thalassemia cases are found in Sri Lanka. There were 2,094 patients on record in 2005 but the number increased to 4,924 by 2010.
The highest concentration of thalassemia patients has been recorded from Kurunegala district.
According to Kurunegala government records, nearly 50 new thalassemia patients register every year, four persons on an average per month. Nearly 100 come for check-ups every month and approximately seven deaths occur every month due to thalassemia.
"Thalassemia patients also need psychosocial assistance as most of them fear to interact with the society," said Asanka Sampath, a counselor with Caritas Kurunegala.
Thalassemia-affected children are highly talented, but support is needed for them to interact with others. The family and neighborhood should also cooperate, Sampath added.
Ariyasigha, a father whose one daughter is wheelchair-bound and also suffers from thalassemia, said he is beholden to Caritas for allowing her to live a normal life. His daughter now runs her own small business sewing pillowcases to pay for her medicines and monthly hospitalization for the blood transfusion.
In Sri Lanka, patients are treated with regular blood transfusions and special injections.
While Caritas may sometime assist patients financially, "we have limited funds," says Harshani Sanjeewani, coordinator of the thalassemia project.
Although the government spends around 1.6 billion rupees to treat thalassemia patients annually, 350 million of which are spent on drugs, the money is not enough.
Hence disseminating the message about the disease and helping people cope with it is very important, she said.
The World Health Organization established May 8 as the World Thalassemia Day in order to make people aware of the disease.