In an event jointly organised by Hemophilia Society, Hyderabad chapter and HyderabadHospitals.com as a part of the world haemophilia day celebrations, these organisations highlighted the problems faced by the patients in the state. During the event they also informed that there are around 15000 haemophilia patients in the state who are yet not in a situation to be treated for this problem and has urged the state government to take steps to ensure free treatment to haemophilia patients in the state.
Haemophilia is a rare and hereditary bleeding disorder that prevents blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. People with haemophilia can experience uncontrolled internal bleeding that can result from a seemingly minor injury.
According to the statistics, there are more than 15 thousand haemophilia patients who are left untreated and going for blood wet products. Disturbingly about 40 per cent from the same are effected with HIV or hepatitis. The estimated haemophilia patients in Andhra Pradesh is 12000 approximately.
Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death. There is no permanent cure but only temporary treatment. The only treatment is replacement of deficient factor. i.e. anti haemophiliac factor VIII and IX and if not treated promptly this lead to disability and life threatening situation.
These factors are not manufactured in India and are imported from foreign countries; they are very expensive and out of reach for many people. The cost of the injection varies from Rs. 4,500 to Rs. 15,000, depending on the dosage.
Dr Ramana. Dandamudi while giving his presentation on, 'frequent joint bleeds and importance of prophylactic management', emphasised on the importance of usage of purified factor injections. He stressed the importance of physiotherapy in preventing the frequent bleeds and as an haematologist he stressed the patients to honour the pain, to take instant treatment either with factor or some alternate, which supports the joint damage.
Dr N Venkata Narayana, secretary of the Society requested the state government to provide free treatment in government hospitals. He pointed out that this is done by various state governments like UP, Delhi, Gujarat, and Tamilnadu and urged the government to adopt the same in the state as well. Dr Ravi Kumar, a leading haematologist and medical oncologist was the chief guest during this event.