4 Lankan thalassemia patients find cure in Bengaluru

Four Sri Lankan children had to travel to India for a bone marrow transplant (BMT) procedure as they were unable to import stem cells from outside the country. Sri Lanka does not have an unrelated donor registry of its own.

BMT is the only curative recourse for thalassemia, a genetic disorder that affects blood production in the body, requiring regular blood transfusions. For the estimated 5,000 thalassemia patients in Sri Lanka, sibling donors and donors within the family are the only options for transplant.

The process of identifying a donor match for BMT is more complex than identifying an organ donor, said Dr Sunil Bhat, head of paediatric haematology, oncology and bone marrow transplant at Narayana Health City (NHC), where the process was conducted on the four children. The youngest was 15-months-old and the eldest, 10 years.

Stressing the need for registered donors in the country, the father of one of the patients and secretary of Thalassemia Society in Sri Lanka, Jayantha Balasooriya, said, "There is one transplant unit in Lanka, but it's not used much as there is no registry. If you don't find a donor match with siblings, there is no other recourse."
"In solid organ transplant, only the blood group needs to match. But for BMT, you need a human leukocyte antigen-matched donor. The chances of finding such a donor in an unrelated registry can range from one in 10,000 to one in a million. Additionally, considering that a whole new immune system will be transplanted as a result of the surgery, the match needs to be perfect to avoid complications," said Dr Bhat.

Thalassemia is diagnosed within the first few months of a child's birth, and blood transfusion every few months is must for survival. However, doctors say this is untenable in the long term due to fear of infection and chances of iron overload that causes complications in endocrine organs such as heart and liver.

"Due to poor quality of life and complications, many patients die in their 20s," said Dr Bhat.
With Organ Donation Day on Sunday, doctors of NHC spoke about enhancing the registry of donors in India as well.
At present, for a population of 1.3 billion, the registry of unrelated donors stands at a mere 1.5 lakh.

" The transplant has given a new lease of life to Purna, Suwini, Mithun and Nethumi. Now these children will have to be administered Immunosuppressants for about a year. After that they will be completely normal. The cost of the surgery is the same as a few years worth of blood transfusion ," he said, adding the unrelated donor registry in India needs more strengthening to have more people sign up.

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