Genetic counselling crucial to curb 'bleeding disorder'

City doctors recommend geneticcounselling 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.

World Haemophilia Day is observed on April 17 and this year doctors urge haemophiliacs to register themselves with the national registry for effective planning and management of the disorder by the Centre and the state governments.

According to city doctors, only 20 per cent of haemophiliacs have registered with the NationalHaemophilia Registry or local haemophilia societies. In the absence of accurate data, it is difficult for the health authorities to plan and executive strategies to control the transmission of haemophilia from haemophiliacs to their offspring.

Haemophilia is a genetic disorder characterized by uncontrolled bleeding. It is also marked by internal bleeding including in the brain. City doctors say that though haemophilia is not curable, patients can lead a near normal life with what is called the 'preventative regular factor replacement therapy' and good medical care. Transmission of haemophilia from one generation to another can be stopped through prenatal diagnosis and genetic counselling.

"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, ApolloHospitals, Jubilee Hills.

Telangana and Andhra Pradesh like many other states in the country do not have free availability of medicines and products to deal with the disorder during emergency. Many hospitals too do not have the equipment to treat haemophiliacs in Hyderabad, leave alone tier two cities.

Since preventive treatment for haemophilia is big burden on one's finances, city doctors suggest that the central government should come out with a comprehensive national policy to take care of haemophiliacs including provision of genetic counselling.

According to paediatric haemato-oncologist Dr Parinitha Gutha of Citizens Speciality Hospital, many haemophiliacs do not register themselves with the national registry.

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