‘Better health care increasing life expectancy of kids with thalassaemia’

With the improvement in health facilities, life expectancy of thalassaemia patients has been increasing in the major cities of Pakistan, with many thalassaemia patients now in their late 20s and early 30s, while some of them are even married, according to blood diseases experts and the patients’ parents.

Urging people to donate blood regularly for children afflicted with thalassaemia and other genetic blood disorders, they called for the government to provide better health facilities in the rural areas of the country for thalassaemia patients.

They also asked the government to implement the laws regarding the mandatory screening of couples for thalassaemia before getting married, and to create awareness on preventable genetic diseases like thalassaemia.

“With regular blood transfusion, iron chelation [removal of excess iron from the body with special drugs] and psychosocial support, thalassaemia patients are now living up to 30 years in major Pakistani cities. Ten years ago, the average life of a thalassaemia patient in the country was not more than 10 years,” haematologist and bone marrow transplant surgeon Dr Saqib Ansari told a gathering of children with thalassaemia and their parents on Sunday.

The event was organised by the Omair Sana Foundation (OSF) in Karachi to distribute gifts among thalassaemia patients. Besides dozens of patients, the programme was attended by Sindh Governor’s Principal Secretary Dr Saifur Rehman, Airport Security Force Director General Maj Gen Abid Latif Khan, comedian Ayaz Khan, Association of Builders and Developers (Abad) Chairman Mohsin Sheikhani, Dr Zeeshan Ansari, health experts, academicians and others.

Dr Ansari said that previously in Pakistan, thalassaemia patients used to live not more than a decade, but now due to regular blood transfusions, the availability of iron chelation medicines and psychosocial support by their families and society, thalassaemia patients are living up to 30 years and beyond, and are even getting married.

“We now have several couples in the city who are thalassaemia major patients and are married to each other. They are strongly advised not to have children, but they can have happily married lives,” he said, adding that now thalassaemia patients are even working after pursuing modern education.

He informed the gathering that a female thalassaemia patient in Karachi holds a PhD degree and is a teacher, while she is pursuing another PhD. He said that it is more a lifestyle than a disease.

He also praised the federal and provincial governments for their support in the treatment of thalassaemia patients, the provision of iron chelation medicines and the establishment of thalassaemia treatment centres in the public sector.

He, however, urged the authorities to extend the facilities to the rural areas of the country, and implement the law regarding the mandatory screening of couples before getting married.

Maj Gen Khan said that he came to know about thalassaemia in 1994 when one of his daughters was diagnosed with the blood disorder, adding that she was raised in consultation with health experts. He said his daughter was now a grown woman and married to a man who himself was a thalassaemia patient.

Praising Dr Ansari for his efforts for thalassaemia patients, and his endeavours to eradicate the disease from the country, he advised children born with thalassaemia not to get depressed, but get their education, take their medicines regularly and go for blood transfusions regularly to live a normal life.

Dr Rehman also praised Dr Ansari, his elder brother (oncologist Dr Kashif Ansari) and their team for dedicating their entire lives for thalassaemia patients and for the eradication of genetic blood disorders from the country. He offered his complete support in their cause.

Comedian Khan also lauded the efforts of the OSF, while Sheikhani said that Karachi’s business community, especially builders and developers, are always available to support their cause.

Later, gifts were presented to children with thalassaemia that were arranged by Maj Gen Khan, Abad, the OSF, comedian Khan and a group of NED University students, who had arranged stationery and educational material for the children. Ration bags were also distributed among the children by the organisers.