SRINAGAR: Belatedly observing the World Hemophilia Day, which happens to be April 17, the patients suffering from the potentially-fatal genetic disorder in Kashmir Valley pleaded for the availability of their life saving drugs.
The hemophiliacs from across the Valley organised a gathering here in collaboration with the Government Medical College (GMC), Srinagar.
Speaking at the event, the patients, many of whom had come from far-off districts, appealed the government to make the drugs, called factors, available for them.
While narrating his ordeal, Abdul Rehman Mir, a 60-year-old man from Anantnag district of south Kashmir, could not control his tears.
He had turned hemophilic in 1982, but no doctor could help him in absence of the factors; without giving him a dose of the factors, no doctor can operate upon him.
It resulted in complications for Mir: his abdomen started to swell and he started suffering pain in knees and arms.
“The continuous refusals of doctors had disappointed me. In fact, I had left the idea of treatment. But in 2008, when I noticed this abnormal swelling, I rushed to a surgeon and he asked me to visit him the next day for surgery,” he said.
Mir had a hernia, but the delay in its treatment also got his intestines involved. Eventually, his intestines too had to be removed.
“I sold my land to get the factor from Delhi, for they were not available here. And without a dose of them, my surgery won’t have been possible,” he said.
“I have to extract my tooth extraction, but there are no factors available for me to go for it.”
The problem encountered by Mir about 30 years ago is still the same: the factors are not available at the Valley’s hemophilia centre.
A few months ago, the patients had approached the governor with their demand for funds for the purchase of the factors. One single factor costs about Rs 4, 000 rupees.
Recently, the Jammu and Kashmir Medical Corporation tried to supply some of the factors, but they are said to have caused allergies in many patients.
“The factors were of a low quality, so it had no positive effect on us. Instead, some of the patients reacted to the drugs,” Parvaiz, also a patient, said.
All 252 hemophilia patients in the Valley had the same demand.
They said many of them work as masons or carpenters whose ailment prevents them from earning enough for their families.
“If they are given the factors on time, they might be able to earn a living for their families,” Adil, a patient, said.
On the occasion, the nodal officer at GMC’s Hemophilia centre, Dr Ruby Reshi, sensitised the health minister, Bali Baghat, about the disease.
She said: “We never get the required funds; we often get just the half of it. It is, therefore, difficult for us to make the facilities available for these hemophiliacs.”
She asked the civil society to come forward and donate money for the patients.
“Hemophilia is a costly disease and government alone cannot help the patients,” she appealed.
In his address, the minister said the state would have to find ways of eradicating the disease.
“I didn’t know much about Hemophilia, but here I became aware about it. We have to formulate a strategy exclusively for the hemophilia patients. We will make a plan and take up the issue with the government of India.”