“If I am alive today, it is because of Dr. P. Nalini. I see God in her,” says K. Yuvaraj (25), a chronic hemophilia patient and software engineer. He was affected by hemophilia when he was 11 months old.
He is not the only one getting continuous treatment free of cost. About 200 patients, including children from Puducherry and nearby districts in Tamil Nadu, continue to get treatment, care, counselling and consider Dr. Nalini (68) the mother of hope for hemophilia patients.
Not many including administrators of government hospitals knew well about the intensity of hemophilia, which is a genetic and life threatening bleeding disorder, until Dr. Nalini, a paediatrician, started the Hemophilia Society in Puducherry, which was affiliated to Hemophilia Federation India (HFI). Thanks to her continued efforts, it has become a home of hope. Many accept that she has played a pivotal role in convincing the Puducherry government to store expensive factors (medicine) for treating hemophilia patients at major government hospitals.
“The cost of a factor is about Rs.4,500. It is not commonly available on the market. Depending upon the intensity of bleeding, patients may need several factors. Only then, bleeding and pain can be controlled. The poor cannot afford the high cost. It was to help the poor the Puducherry chaptor was started. Thanks to the support of kind-hearted persons, many poor patients are getting continuous attention,” says Dr. Nalini, who worked with Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER) for more than three decades.
She said that it was important for hemophilia patients to avoid injuries. In persons with hemophilia, blood wouldn’t clot normally due to deficiency or absence of clotting proteins called factors. It would tend to bleed internally and externally even with a minor injury. The disease was a lifelong bleeding disorder, incurable in nature and very expensive to manage in terms of medication and care. Prolonged and recurrent bleeding in joints and muscles could lead to permanent disability or even death. However, lack of awareness continued to affect patients.