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19 June, 2019 00:00 00 AM / LAST MODIFIED: 19 June, 2019 01:45:34 AM
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Lack of data holds back management

Thalassemia is an inherited blood disorder characterised by less hemoglobin and fewer red blood cells in human body than that of the normal level. It is the most common congenital disorder in Bangladesh. About 7,000 to 14,000 children are born with the disorder in the country every year, while awareness of the disease is very poor. Absence of any government study or data on thalassaemia carriers makes the situation more challenging. In a three-part series, The Independent looks into the country’s thalassaemia situation, which has turned into a silent killer. Today’s report is the first installment
RAFIQUL ISLAM AZAD, Dhaka
Lack of data holds back management

There is no government study or baseline survey on thalassaemia carriers and patients in Bangladesh, despite the non-communicable disease spreading silently, putting a huge burden on the respective families and country’s economy.  Owing to the absence of any government database, private hospitals and institutions use different figures and statistics of thalassaemia carriers and patients. They acknowledge having no exact data.

Thalassaemia is a hereditary blood disorder that causes severe anaemia in children. Thalassaemia is very common disease in Bangladesh, said experts.

A child can only be born with thalassaemia if it inherits these faulty genes from both parents. If both parents have the faulty gene that causes beta thalassaemia major, there's a one in four chance of each child being born with the condition, they said.

The parents of a child with thalassaemia are usually carriers. This means that they only have one of the faulty genes.

According to the Thalassaemia Foundation Hospital, there are about 1.10 crore thalassaemia carriers in the country, while the number of patients is about 60,000. Moreover, about 7,000 thalassaemic children are born in the country every year, it said.

However, the Thalassaemia Centre at the Dhaka Shishu Hospital says it is estimated that nearly 14,000 thalassaemic children are born every year here.

Dr Md Selimuzzamnan, head of the department of haematology and oncology department of the Dhaka

Sishu Hospital, said there is no exact figure of thalassaemia carriers and patients. “We don’t know the number of the thalassaemia patients. Someone said there are about 20,00,000 patients in the country and someone said the figure may be 1,000,000,” he added.

Dr Selimuzzamnan, also secretary general of the Thalassaemia Centre at the Dhaka Shishu Hospital, said they had carried out a survey at a school in Mohammedpur in 2015 and found that about 8-9 per cent of the students were thalassaemia carriers. “We depend on data being used by an international agency or organisation. The government is yet to carry out any survey and create database on the disease,” he added.

He said the Thalassaemia Centre at the Dhaka Shishu Hospital has 20 beds for thalassaemia patients and can only enrol 2,500 patients at a time with its existing capacity of logistic support and manpower. “More thalassaemia patients come to the centre, but we cannot enroll them due to our limitation and many of them go back,” he added.

Dr Syeda Masuma Rahman, vice-chairman of the Bangladesh Thalassaemia Foundation, said they use the figure of 1.10 crore thalassaemia carriers and 60,000 patients provided by the World Health Organization (WHO) some 15 years ago. The real number of thalassaemia carriers and patients will be more than that, as the number of carriers and patients are increasing day by day, she added. Dr Masuma said they are always demanding that the government carry out a baseline survey on thalassaemia carriers and patients, but it is yet to be done. “The government has not carried out any survey on thalassaemia. It has no data base with it,” she said.She suggested that the government should carry out a survey at least through its community clinics at the union level across the country by screening bloods of patients suspected of suffering from anaemia and other symptoms of the disease.

Dr Noor Mohammed, director (non-communicable diseases) of the Directorate General of Health Services, admitted that the government has no study or survey on thalassaemia carriers and patients.

In the five-year operation plan for 2017-2022, thalassaemia is included among 17 other non-communicable diseases, he mentioned. He expreesed hope that the government would soon take the non-communicable disease of thalassaemia separately and a massive plan of action would also be launched to battle it.

Dr Noor said they would also place a proposal with the health ministry to carry out a survey on thalassaemia considering its severity.

Most children born with thalassaemia experience health problems a few months after birth, and less severe cases may not be noticeable until later in childhood or even until adulthood. The main health problems associated with thalassaemia are: anaemia and severe tiredness, weakness, shortness of breath, pounding, fluttering or irregular heartbeats (palpitation) and pale skin caused by the lack of haemoglobin, said experts.

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Editor : M. Shamsur Rahman

Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

Editor : M. Shamsur Rahman
Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

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