1. What is haemophilia?

When you cut yourself, proteins called clotting factors combine with your blood cells called platelets to make the blood thick and sticky. This makes the bleeding stop. Haemophilia, a congenital lifelong bleeding disorder that prevents the blood from clotting properly, leads to patients bleeding internally, mostly in the joints, muscles and vital organs like the brain. In many cases, the disease leads to permanent disability.

2. How common is it?

Currently, about 17,000 people in the United States have haemophilia, which affects mostly boys — with about one in every 5,000—10,000 born with it.

India has nearly over 100,000 haemophilia patients.

3. How does it spread?

It’s a genetic disorder, which means it is the result of a change in genes that was either inherited (passed from parent to child) or occurred during development in the womb.

Girls are more rarely affected. A male can’t pass the gene for haemophilia to his sons, but his daughters will be carriers. Each male child of a female carrier has a 50 percent chance of getting haemophilia.

4. Can it be cured?

It cannot, so far. But it can be controlled. Gaurav Bhardwaj, senior consultant Saket City hospital, said the quality of life of a patient can be definitely improved and life expectancy increased with proper care and treatment.

“Continued medical advancement means the situation is constantly evolving. In the 60s, life expectancy for haemophilia was 11 years. Though the condition is potentially life threatening in severe conditions when there is spontaneous internal bleeding, today life expectancy at birth is over 50-60 years,” he said.

5. What is the need of the hour?

“There is no facility available for blood fractionation — or the process of separating whole blood into its component parts,” R.N. Makroo, Department of Transfusion Medicine, Indraprastha Apollo Hospitals said. During the fractionation process, blood components needed by hemophilia-affected people is separated and then transfused to haemophilia patients.

Though many people are being treated with this method, in India there is no blood fractionation unit working as of now, said Makroo, adding that the required blood components are being imported into India, pushing up treatment costs.

Some feel the government should make treatment and medicines for haemophilia-affected people completely free. “It is a rare disease and only 16,000 patients are registered across the country. The government can easily make treatment free for them,” Indira Venkatraman, who heads the Delhi chapter of the Haemophilia Federation of India said.IANS