SWAT: In the backdrop of rising thalassaemia cases across Malakand division, the young people of Swat are spearheading a compassionate campaign, organising blood donation drives throughout the year to sustain the lives of hundreds of children grappling with the genetic disorder.

Even during the holy month of Ramazan, volunteers and local organisations such as the Al-Fajar Foundation, worked tirelessly to address the urgent demand for blood transfusions, embodying a profound sense of community solidarity.

Thalassaemia, an inherited blood disorder caused by reduced haemoglobin production, leaves patients reliant on regular blood transfusions to survive.

In Malakand division alone, approximately 400 children are registered with the Al-Fajar Foundation, which coordinates critical medical support. “These children’s lives hang in the balance – they depend on our blood to stay alive,” said Murad Ali Khan, a teacher and regular donor, as he rolled up his sleeves at a recent camp.

Dr Ayesha Khan, a haematologist at Swat Medical Complex, underscored the genetic underpinnings of the crisis. “Thalassaemia arises from mutations passed from parents to children. If both parents carry the thalassaemia trait, there’s a 25 per cent chance their child will inherit the severe form,” she explained. “In regions like Malakand, consanguineous marriages – a cultural norm here – significantly increase carrier rates, leading to higher prevalence.”

Pakistan bears one of the world’s heaviest thalassaemia burdens, with an estimated 100,000 patients nationwide and 5,000 new cases reported annually, according to the Pakistan Thalassaemia Welfare Society.

Khyber Pakhtunkhwa accounts for roughly 10,000 cases, with Malakand division reporting 400 registered children reliant on transfusions.

Dr Khan stressed the need for systemic change: “Premarital screening and genetic counselling are vital. Without awareness, this cycle will persist.”

The Al-Fajar Foundation, in collaboration with Swat’s youth, has transformed blood donation into a grassroots movement. Volunteers leverage social media to rally donors, organise camps in remote villages, and even host educational seminars. “People here have big hearts. During Ramazan, when fasting complicates donations, we adjust timings to evenings and still see queues,” said Lawangeen Khan, a youth representative.

Shakil Ahmad, a social activist in Mingora, described his motivation: “Donating blood gives me purpose. These children are fighters – how could I not help?” He regularly persuades friends and strangers alike to participate. Meanwhile, Rahman Ali Sayel of Al-Fajar Foundation highlighted their holistic approach: “Beyond blood, we provide medication, financial aid, and advocacy. But without donors, none of this would be possible.”

Despite the enthusiasm, challenges persist. Blood shortages are frequent, and rural families often struggle to access treatment centres. “Some travel for hours to reach our camps. It’s exhausting, but their determination keeps us going,” said Sayel. Cultural misconceptions also linger. “Many believe donating blood weakens them. We counter this by explaining that the body replenishes it within weeks,” added Lawangeen.

The foundation’s efforts are gradually shifting attitudes. At a recent camp in Mingora, first-time donor Faridullah Khan, 22, admitted, “I was nervous, but seeing others do it inspired me. Now I’ll come every three months.”

Thalassaemia’s strain on Pakistan’s healthcare system is immense. Treatment costs – including transfusions and iron-chelation therapy – push many families into poverty. The federal government’s 2018 National Blood Policy aimed to improve safety and access, but implementation remains patchy in rural areas like Malakand. “We rely heavily on NGOs and local volunteers,” acknowledged Dr Khan.

In KP, the provincial government has partnered with charities to establish thalassaemia centres, yet gaps persist. “Malakand needs a dedicated treatment facility. Travelling to Peshawar isn’t feasible for most,” argued Sayel.

While applauding the youth’s efforts, health experts urge long-term solutions. “Screening programmes for engaged couples could slash future cases,” insisted Dr Khan. Communities, too, are stepping up. Religious leaders in Swat now discuss thalassaemia in Friday sermons, emphasising that genetic testing aligns with Islamic principles of safeguarding health.

Published in Dawn, April 6th, 2025