Preventing bleeds before they happen: understanding prophylaxis in haemophilia care
Haemophilia care is now moving towards advanced approaches, rebalancing the body’s clotting system, and eventually, restoring it altogether. This takes us closer to a day when “zero bleeds” are not only a goal, they are an achievable reality, allowing individuals with haemophilia to have better quality of lives
Haemophilia is an inherited, rare bleeding disorder in which the blood fails to clot due to a lack or deficiency of clotting factors, most often Factor VIII in Haemophilia A. That means even small injuries can cause excessive bleeding. But more seriously, spontaneous internal bleeding can occur, usually in joints and muscles, which is excruciatingly painful and can cause chronic permanent disability. A bleed can happen even in the brain, without any trauma, which can be very dangerous and even life threatening.
The difference between India’s estimated and actual diagnosed cases points to a large number of undiagnosed haemophilia patients. In India, the expected number of haemophilia cases is around 1 to 1.5 lakh, based on a prevalence of 1 in 10,000. In a population of 1.4 billion however, we have identified only about 29,000 patients: just 20% percent of estimated cases. This is due to lack of awareness, limited diagnostic facilities, and socio-economic barriers. It put patients at risk of bleeding after minor trauma or surgery, and makes them vulnerable to disabilities. Alarmingly, each untreated bleed is estimated to reduce life expectancy by around 16 days. Imagine how debilitating this could be in patients who have chronic bleeds, and a high annual bleed rate. Without early diagnosis, proactive care is a socio-economic challenge leading to school absenteeism, unemployment, and loss of productivity.
What's Your Reaction?
Like
0
Dislike
0
Love
0
Funny
0
Angry
0
Sad
0
Wow
0
