Qutub Minar turned red on Monday night and will be lit up with red lights on Tuesday night as well to raise awareness about an inherited bleeding disorder called haemophilia.
Haemophilia is a genetic disease where the body’s ability to make blood clots is impaired. For people with mild and moderate haemophilia, blood does not clot automatically when they get injured or even during a surgery leading to excessive bleeding. For people with severe haemophilia, the absence of clotting factor means that they can start bleeding spontaneously from their joints, muscles or other body parts.
“The biggest problem is with the bleeding in the joints. Repeated bleeding into the joints leads to degeneration, just like pouring water repeatedly on a hinge would,” said Dr Tulika Seth, professor of haematology at All India Institute of Medical Science, Delhi.
There are a little over 18,000 haemophiliacs registered with the Haemophilia Federation of India. “This is the best estimate of the people, who surely have haemophilia, but various estimates puts the number at around one lakh. This means many people are not getting diagnosed,” said Dr Seth.
The only treatment is to give the missing clotting factor to the patients, which can be extremely expensive.
“There are two ways of administering the clotting factor — one is prophylactic, which means the missing clotting factor is provided regularly at an interval of a couple of days to prevent bleeding, and the other is to administer it once the bleeding occurs,” said Dr Seth.
The cost of treatment can range from 20,000 to more than a couple of lakhs a year, depending on the age, weight and the kind of lifestyle of the patient.
“Patients with severe haemophilia should be put on a routine treatment regimen. There has to be a move towards prophylactic treatment rather than wait for the bleeding to occur,” said Dr Sunil Bhat, head of paediatric haematology at Mazumdar Shaw Cancer Centre, Narayana Health City, Bangalore.
This is because the evidence suggest that the lifetime cost of both prophylactic treatment and treatment once the bleeding occurs is the same. “Severe haemophiliacs with prophylactic treatment are also able to lead a more normal life, do daily chores and even play, whereas the joints are usually severely damaged in the others, making joint replacement surgeries necessary,” said Dr Seth. The knees, ankles and elbows are the most affected.
“Although age agnostic, the worst affected are children and infants. Infants show signs of bruises and haematomas (swelling caused by collection of blood outside vessels) as they learn to walk. In fact, in children, recurrent bleeding tends to happen in the joints as they grow and gain weight,” said Dr Bhat.