The State has about 1200 registered haemophiliacs but the numbers may be higher because there are many undetected cases, the Haemophilia Society has said.
Shortage of Haemophilia factor to be supplied externally, high cost of treatment, and poor financial capacity of patients made this genetically transmitted disorder a deadly disease, the society said on the occasion of World Haemophilia Day on Thursday.
The Haemophilia Society organised a patient awareness camp and discussion session on the disease and its management at Government Medical College Hospital, Kozhikode, to mark World Haemophilia Day.
At present only seven medical centres in Kerala — Government medical colleges in Thiruvananthapuram, Kozhikode, Thrissur, Kottayam, and Alappuzha besides District Hospitals at Aluva and Malappuram — provided haemophilia treatment.
The aim of the camp was to raise awareness about haemophilia, the diagnosis of the disease, and the treatments available for it. The State government was making consistent efforts to make available replacement therapy of factors to patients. Yet there was need for more funds, education, and training, it was said.
Continuous availability of haemophilia factors to patients by the State government could be a step to ensure that these patients got the best available care.
The next step would be to create more awareness about the disease and providing comprehensive psycho-social care mechanism.
A major challenge in treating haemophilia was the financial status of the patients.
An appeal was also made to the government to take immediate notice of the matter and to extend support to the patients who were dire need.
There was also a need to set up more day care centres with proper infrastructure and facilities.
