Thalassaemia in Pakistan: Families Fight for Survival Amid Blood Shortages and Hope
Lahore, Pakistan — Three-year-old Abdul Hadi Nadir grows weaker each time a fever strikes. His small frame turns pale, his appetite fades, and his skin takes on a yellow hue. For his mother, Rimsha Nadir, these are familiar and terrifying signs — her son needs another blood transfusion.
Inside a modest but crowded clinic in Lahore, Rimsha sits among other anxious parents clutching their children. Some of the young patients are hooked to IV lines, receiving blood that will temporarily restore their energy. Others, exhausted by the process, sit silently as their mothers fan them or stroke their hands. Abdul Hadi, one of the youngest in the room, watches cartoons on his mother’s phone to pass the long hours ahead.
“It’s always a long day,” says Rimsha, gently brushing her son’s hair. “But once he gets the blood, he becomes alive again. He eats, he smiles, he plays.”
Abdul Hadi was diagnosed at just nine months old with beta thalassaemia major, a severe inherited blood disorder that prevents the body from producing normal haemoglobin. Without regular blood transfusions, children with this condition often die before reaching the age of 10.
A Lifelong Battle for Blood
In Pakistan, more than 100,000 people are registered with thalassaemia major, and an estimated 5,000 children are born with the disease every year. While exact death rates remain unclear, doctors say most patients do not survive beyond childhood — especially those unable to access consistent medical care or blood donations.
For Rimsha, the monthly transfusions are the only lifeline keeping her son alive. The young mother spends entire days at the clinic, watching Abdul Hadi’s color slowly return after each session. “We go through this every month,” she says quietly. “But we have faith. I believe he will grow up and become a doctor one day.”
Her hope is not uncommon among parents of children with thalassaemia, a condition that is part of what experts call the “thalassaemia belt” — a vast region stretching from Africa and the Mediterranean through the Middle East, South Asia, and Southeast Asia. Researchers believe the genetic mutation that causes thalassaemia initially evolved as a natural defense against malaria, which was once widespread in these regions.
The Science Behind the Disease
Thalassaemia is a genetic disorder passed down when both parents carry the faulty gene. If both parents are carriers, there’s a 25 percent chance that their child will be born with thalassaemia major, a 50 percent chance they will be a carrier, and a 25 percent chance they will inherit neither gene. Carriers, known to have thalassaemia minor, usually live normal, symptom-free lives but can unknowingly pass the disease to their children.
A 2021 study published in the European Journal of Human Genetics identified thalassaemia as the most common genetic disorder in Pakistan. The country’s estimated carrier rate stands at 5 to 7 percent, meaning roughly 13 to 18 million Pakistanis are carriers.
At the Noor Thalassemia Foundation in Lahore, where Abdul Hadi receives treatment, medical director Dr. Haseeb Ahmad Malik says early testing and public awareness are critical. “If couples are tested before marriage, we can prevent new cases,” he explains. “But most families only find out after their first child is diagnosed.”
The Struggle for Access
Dr. Malik walks briskly through the clinic’s narrow corridors, greeting each child by name. Many of his patients live in distant rural areas and travel for hours to reach the facility. “Some come from outside Lahore,” he says. “Public transport is unreliable, and parents often spend their entire day here just for one transfusion.”
While Abdul Hadi’s family lives half an hour away by car, others face long and costly journeys. Access is a persistent challenge, as most thalassaemia treatment centers are located in large cities, leaving rural patients underserved.
Even for those who reach the clinics, blood shortages are common. Donations often decline during Ramadan, during heatwaves, and in times of national crisis such as the COVID-19 pandemic. “Without regular donations, treatment becomes unpredictable,” says Dr. Malik. “We always need more blood than we have.”
Building Pakistan’s Blood Donation Network
Pakistan’s first organized volunteer blood donation system was established in 1978 by the Fatimid Foundation, a nonprofit organization that continues to provide free blood and treatment for thalassaemia patients across the country.
Before that, says Moinuddin Haider, the foundation’s chairman and a former interior minister, the situation was dire. “Desperate people used to sell their blood outside hospitals,” he recalls. “Families like mine would gather everyone to donate because we didn’t have any other option.”
Haider’s own family was affected by the disease — two of his nephews were diagnosed with thalassaemia major. Only one survived into adulthood. “He’s 40 now,” Haider says. “When I think back, I realize how far we’ve come. Today, many patients live longer, healthier lives because of better awareness and NGOs providing free transfusions.”
Despite the progress, Haider acknowledges that cultural stigma, lack of education, and cousin marriages continue to perpetuate the spread of the disease. “We need nationwide screening and counseling programs,” he emphasizes. “No family should have to discover this only after losing a child.”
The Human Cost Behind the Numbers
By mid-afternoon at the Noor Foundation, more families have arrived. Among them is 22-year-old Muhammad Ahmad Dildar, waiting for his turn to receive the blood that keeps him alive.
With a broad smile, Muhammad introduces himself. “I’ve been coming here since I was three months old,” he says. “Now I come alone.” His parents, who are first cousins and both carriers, taught him to take his health seriously. “They always made sure I never missed a transfusion,” he adds.
Dr. Malik nods approvingly. “He’s one of my most responsible patients,” he says. “His dedication is why he’s still alive and healthy today.”
Muhammad visits the clinic twice a month and drives for a local ride-hailing app to support himself. “When I start feeling tired, I know it’s time to come back,” he says. “This blood — it’s my fuel.”
Hope and Awareness for the Future
While medical advancements and NGO support have improved survival rates, experts stress that prevention remains the best long-term solution. Premarital screening, public education, and genetic counseling could drastically reduce new cases — but implementation remains inconsistent.
“We’ve made progress, but awareness is still low,” says Dr. Malik. “If both parents are carriers, they should know the risks before having children.”
Organizations like the Fatimid Foundation and Noor Thalassemia Foundation continue to campaign for awareness, particularly in schools and rural communities. They also encourage voluntary blood donations year-round to sustain patients like Abdul Hadi.
Back at the clinic, Rimsha watches as the color returns to her son’s cheeks. “He’s my whole world,” she says, smiling through tears. “I just pray for more people to give blood, so children like him can have a chance.”
Her words echo the plea of thousands of families across Pakistan — a call for compassion, awareness, and a stronger healthcare system to ensure no child is lost for lack of blood.