Three times a week, families have to travel to Srinagar as no district hospital has blood factor
Srinagar: Muhammad Rafeeq, 6, is just like other boys of his age – keen to play outdoor games. But he is unable to, for doctors have strictly advised his parents to keep him away from active sports. He remains limited to his home ever since doctors diagnosed him with a condition called haemophilia.
It’s a rare disorder in which blood doesn’t clot normally, because it lacks sufficient blood-clotting proteins (clotting factors). One who has haemophilia bleeds for a long time even from a minor cut to the skin.
Rafeeq, who lives in south Kashmir’s Ashmuqam, was diagnosed with severe haemophilia, referred to as Haemophilia A, when he was just one year old. His parents had found him bleeding from nose and ears.
“It panicked us and we rushed him to a nearby hospital. The doctors there were clueless about his condition. They immediately referred him to District Hospital Anantnag,” said Rafeeq’s mother, Rubeena.
She said doctors at Anantnag district hospital also couldn’t control his bleeding, and advised them to shift him to GB Pant Children’s Hospital in Srinagar.
“We followed their advice and reached the children’s hospital. It was after 20 days of rigorous treatment that his bleeding stopped,” Rubeena said.
Doctors at GB Pant Hospital informed the family about their child’s rare condition and said he will need hospitalisation every time he bleeds.
Haemophilia doesn’t have a permanent cure, anywhere in the world. However, the complications can be restricted using clotting factor replacement therapy. Rafeeq receives shots of a clotting factor, called Factor VIII, three times a week at SMHS Hospital in Srinagar. It means travelling thrice a week a long distance from home in Ashmuqam.
The regular travelling has caused pain and inflammation in his joints. It has affected his studies and other daily activities, leaving him overly dependent on his parents.
“I keep him locked in a room while doing household chorus. He is unaware of his disease and the dangers it puts him in. I have to forcibly restrict him from playing. I can’t let him die bleeding,” Rubeena said.
The family has been facing this distress ever since doctors diagnosed Rafeeq with haemophilia and told them that no treatment was available for it in any nearby hospital.
“We have to travel almost 200 kilometers every other day to visit SMSH Hospital for his treatment. No other hospital admits him because they have no blood factor available for such patients. The regular travel has left us in huge debt,” Rubeena said.
Talking to Kashmir Reader, she appealed to the government to make blood factor available for such patients at every district hospital.
Kashmir has hundreds of families who are facing the burden of this disease, suffering helplessly as no district hospital has treatment available for it.
Like Rafeeq, 3-year-old Safan and his two brothers are also suffering due to lack of treatment facilities for haemophilia in Kupwara district.
The family told Kashmir Reader that their kids are facing disability due to lack of treatment in the district. “One of my sons has been left immovable after an Ayurvedic doctor in our area misdiagnosed him, following denial of treatment by doctors at the local hospital,” said the mother.
Thankfully for Rafeeq and Safan, they have support of the Haemophilia Society of Kashmir. Their parents are members of the organisation, which has been raising funds for them whenever they are in need.
Syed Majid Qadri, president of the society, said that most of the district hospitals refuse to admit haemophilia patients, which gives rise to complications among them.
“Doctors simply turn them away, citing lack of blood factors in the hospital,” he said.
Qadri, who is a haemophiliac himself, told Kashmir Reader that there are 308 patients registered with the society across the Valley and 80 percent of them live in far-flung areas.
“The government should have opened day care centres in every district, so that patients can receive treatment close to their home. For them, travelling means more trouble and risk to their life,” he said.