Thalassemia alert!: Desperate measures

The real tale of father who is ready to sell himself for his daughter’s life.

KARACHI:

She was just six months old when her parents found out that she has Thalassemia. Today, two-and-a-half-year-old Ansira Noor’s parents are more desperate than ever and will go to any length to save their only child.

Noor is one of Pakistan’s large number of Thalassemia patients. 50,000 to 100,000 patients are suffering from Thalassemia in Pakistan and every year 5,000 babies are born with the deadly disease, according to data released in 2013 by medical experts. According to the Omair Sana Foundation’s data, the incidence of the disease in Pakistan is five per cent on an average.

Little Noor is the daughter of Ghulam Murtaza, who hails from Udheja Mohalla of Badin city and is a refrigerator mechanic by profession. Murtaza and his wife are not cousins. “Doctors say that thalassemia is more common in cousin marriages,” he shared. This is why the couple was in a state of shock when the local doctors confirmed that Noor had a blood disease. “It is unbearable to see your child cry with pain,” said the unhappy Murtaza.



The doctors have advised the couple not to plan another child, and if they do, they should first undergo tests. “I have been told that the tests will be conducted in Karachi. But my wife and I aren’t thinking of extending our family. We cannot afford any risks.”

Murtaza travels to Golarchi city, some 32 kilometers from Badin, to earn a living. “It is hard to pass the time at work. Her twinkling eyes make it hard for me to pay attention to my work. The softness of Noor’s little fingers makes me happy.”

In the beginning, Murtaza’s friends and relatives generously offered all their support to him including blood donations. But gradually, donor fatigue set in and they started drifting away. “Every month, I have to request my friends to donate at least a bag of blood in order to keep Noor alive,” he explains. “They don’t receive my calls. They make lame excuses to avoid meeting me. But it is not their fault.”

“I would put myself on sale if somebody assures me of Noor’s treatment. She means the world to me,” said Murtaza.

Murtaza is keeping an eye on the coming years, now that she’ll be turning six years old. “She’ll need at least two bags of blood a month. I already feel that I may lose my daughter and my friends in the next 15 years.”

According to Dr Tahir Shamsi, the head of National Institute of Blood Diseases (NIBD) Karachi, there are about 25,000 children with thalassemia major and about 3.5 million children with minor thalassemia in Sindh alone.

“On a yearly basis, there is an increase in 2,000 thalassemia patients in Sindh,” said Dr Shamsi. Their treatment sums up to billions of rupees a year. “Around Rs 2.25 billion are being spent on these children to keep them alive.”

The doctor praises the passing of the Sindh Prevention and Control of Thalassemia Bill by the government of Sindh. However, he is of the view that time is required in order to control the disease. “It will take at least 30 years to overcome this issue. It is not an easy task,” added Dr Shamsi.

He added that a thalassemia patient needs at least 12 bags of blood a year. “Some need more than a bag per month. Around 300,000 bags are a yearly requirement, whereas our capacity is around 400,000 bags,” he shared with The Express Tribune.

According to Dr Shamsi, awareness amongst the public is necessary in order to prevent adding to the existing number of thalassemia patients in Pakistan. “Convincing people is required. Genetic counselling and the test is needed. The government does not provide any test facilities related to the disease, he shares. “Thalassemia is a major public health concern and the government has to resolve it in the coming days.”

The Sindh Assembly passed the Sindh Prevention and Control of Thalassemia Bill on September 19, 2013. It seeks reduction in the rising number of thalassemia patients in the years ahead. The Act clearly states that everyone will have to undergo a thalassemia test before getting married. “All individuals who are or shall ever be in the reproductive phase should have their thalassemia status checked by a simple blood test called hemoglobin electrophoresis”.

It also stipulates that no tests shall be conducted or samples obtained from any individual without the consent of the persons concerned.

Good news for Sindh could be the ‘Thalassemia Hemoglobinopathy Found­ation’ that is planned to be established with its head office in Karachi. It will take all measures related to the promotion, development and financing of thalassemia and hemoglobinopathy centers across the province.

However, implementation of such programs and laws ensuring blood screening of couples wishing to become parents is something that must be brought into action all over Pakistan.

Published in The Express Tribune, January 28^th, 2014.