Srinagar: Mohsin (name changed) is an ambitious 22-year old young man, who has desperately waited for an admission to a college.
An entrance exam that could have helped him get into his dream institution is scheduled by the end of this month. However Mohsin is likely to lose this chance due to the apathy of the health department. This neglect may end up him losing his arm as well.
Mohsin suffers from Von Willebrand disease, a rare disease due to which his blood does not clot properly. He gets frequent bleeding in joints and this has made his life nearly confined to a particular safety schedule. A clotting factor can help him and many others like him recover from a bleeding episode and save their limbs and other organs from disability. But the factor, as per the Haemophilia society of Kashmir, is unavailable for the past three months at Kashmir’s only Haemophilia Centre located at SMHS Hospital, where it was being provided.
“We have been running from the pillar to post for the past three months, but to no avail,” said Syed Majid Qadri, president of the Haemophilia Society. He said that earlier, funds were unavailable and that used to pose issues for the Haemophilia patients.
“Now we have funds but the procurement process has been made difficult,” he said.
Like him, another Von Willebrand patient, Maymoona (name changed), 35-year old, awaits a surgery that can save her from deafness. A blood clot is damaging her auditory nerve but without the factor, this 35 year old cannot be operated.
Medical Superintendent SMHS Hospital, Dr Kanwaljeet Singh said the factor was a new one and NoC was awaited for its purchase.
“It is a costly factor but we have no dearth of funds for Haemophilia at present,” he said. He said as soon as NoC was received, the factor would be procured by JK Medical Supplies Corporation.
For years, the patients with Haemophilia and other bleeding disorders have suffered death and disabilities due to the non availability of Factors. Earlier, the factors could not be procured due to non availability of funds but J&K government, after the intervention of High Court, declared the disease a medical emergency and funds were allocated to help the hundreds suffering from bleeding disorders. “Along with funds, we also need empathy and commitment to help the patients,” Qadri said.