Srinagar, Apr 17: On World Hemophilia Day, the harsh reality of fighting a rare genetic disorder is thrown into sharp focus in Kashmir where 421 patients are grappling with the lifelong burden of haemophilia.
Their unrelenting battle is compounded by the crippling costs of factor medications – drugs they need regularly to prevent potentially fatal bleeding episodes.
Haemophilia is an inherited condition that impairs the body’s ability to clot blood, leading to excessive bleeding even from minor injuries.
In Kashmir, 421 patients are registered with the Hemophilia Society of Kashmir, fighting to manage this debilitating disorder.
In 1992, when Syed Majid Qadri was a toddler, he accidentally bumped into a wall of his house in Srinagar, leaving him bleeding profusely.
He was rushed to SKIMS hospital, where tests revealed that he suffered from haemophilia, a genetic disorder that impairs blood clotting.
The next three decades have been an age of struggle for this man, who has been fighting the genetic disorder with a smile on his face.
“Life is difficult, but I have no choice other than to fight,” Qadri says. “I can’t do normal things, as doctors avoid haemophilia patients from doing laborious work due to the risk of internal bleeding. Now I have resumed my studies. Initially, I had taken a break, but now I have restarted, and whenever I get time from my treatment, I attend college classes. Though it is difficult at 32, what can one do?”
Qadri often has to attend the Hemophilia Day Care Centre at Srinagar’s SMHS hospital for medication.
He is one of 421 haemophilia patients who must visit this centre once or twice a week to receive haemophilia factor medications.
On April 17, World Haemophilia Day is commemorated globally as a healthcare event aimed at raising awareness about this genetic bleeding disorder.
Organised by the World Federation of Haemophilia (WFH), the theme for 2024 ‘Equitable Access for All: Recognising All Bleeding Disorders’ highlighted the need for equal access to treatment and care.
In Kashmir, the Haemophilia Society of Kashmir marked this annual observance by hosting an event at the Hotel Opera Inn.
“The gathering brought together medical professionals, support staff, and patients affected by haemophilia. On the occasion, the society drew attention to the pressing challenges faced by patients in Kashmir, including irregular supply of vital anti-haemophilic drugs and the unsafe condition of the treatment facility, which was deemed unfit following the 2014 floods,” the Haemophilia Society said in a statement.
The function was attended by the Head of the Department of General Surgery, GMC Srinagar, Dr Iqbal Saleem; Associate Professor Department of Orthopaedic Surgery Bone and Joint Hospital Srinagar, Dr Faiz; Consultant Rheumatologist, Dr Mukhtar Masoodi; Assistant Professor Department of Maxillofacial Oral surgery GDC Srinagar, Dr Ashaq Ali; Consultant Paediatric Haematologist Associated Hospital GMC Srinagar, Dr Altaf Kambay and Dr Faheem Manzoor.
According to the Haemophilia Society, the haemophilia treatment is notoriously expensive, with a single dose of the clotting factor ranging from Rs 6000 to a staggering Rs 24,000.
Qadri, who also serves as President Hemophilia Society of Kashmir, revealed that his organisation has 421 registered patients, with over 250 requiring Factor VIII medicines – all of whom have been without medication for the past two months.
“After the court direction, the J&K government has been asked to provide Haemophilia patients free medication, but it is not available regularly which creates problems. We also seek donations to provide for medicine costs of some fellow patients who are not in a position to pay for it,” the patients said.
Head of the Department of Pathology at GMC Srinagar, Dr Sheikh Bilal said, “Hemophilia patients require consistent and regular administration of factor medication to prevent life-threatening bleeding episodes. While managing this chronic condition has been an uphill battle, the advent of new and improved haemophilia treatments has offered a glimmer of hope.”
Hemophilia meaning love (philia) of blood (hemo) has been referred to as the disease of the kings as is often described in the descent of Queen Victoria of England.
Haemophilia affects 1 in 10,000 live births.