Haemophilia is a lifelong and incurable disorder that can only be managed by use of certain medicines called Anti Hemophilia Factors (AHFs).
City doctors recommend genetic counselling on the eve of the World Haemophilia Day to prevent the transmission of this 'bleeding disorder' to the next generation. People without a family history of haemophilia too should undergo blood tests to rule out any hidden genetic traits of the disorder.
‘Haemophilia is a rare disorder in which the blood doesn’t clot normally because it lacks sufficient blood-clotting proteins (clotting factors).’
These medicines are not manufactured in India, are very expensive and imported from developed countries like USA, Germany and Canada. Hence, medicines are often inadequate or unavailable in almost all the hospitals that leads to deterioration in condition of people living with the condition.
The government can help by making medicines available at all times and address the shortage of trained haemophilia doctors and nurses in government hospitals, say those working in the field of haemophilia patient care.
"Haemophilia occurs in one out of 10,000 babies born. There is no official record of haemophilia cases in Telangana and Andhra Pradesh. However, it is estimated that the Telugu states together have about 4,000 cases. Though haemophilia can affect men and women, it's mostly manifested in men as the disorder is linked to X or female chromosome. We now have facility to prevent any damage to joints or muscles due to internal bleeding," said Dr Padmaja Lokireddy, consultant, haematooncology and stem cell trans plant, Apollo Hospitals, Jubilee Hills.
There is also a shortage of coagulation laboratories in the country.
Vikash Goyal, president Haemophilia Federation (India), says, "We have tried our level best to involve as many stakeholders as possible so that we all work as a team to take our movement forward that is care and solace for people living with haemophilia."
"We are advancing the need of developing these, at least 1 Haemophilia Comprehensive Centre in every state as well as 1 HaemophiliaTreatment Centre in every district. HFI has been raising the problems the Haemophilia Community faces for the past 34 years," he said.
Haemophilia is a rare disorder in which the blood doesn't clot normally because it lacks sufficient blood-clotting proteins (clotting factors). A person with haemophilia may bleed for a longer time after an injury.
Small cuts usually aren't much of a problem. The greater health concern is deep bleeding inside an affected person's body, especially in your knees, ankles and elbows. That internal bleeding can damage your organs and tissues, and may be life-threatening.