For the patients suffering from Haemophilia, the Manipal Chapter of Haemophilia Society will organise a summer camp on the theme “Building a family of support,” at the Bharathiya Vikas Trust from Friday to Sunday – April 17 – 19, on the occasion of World Haemophilia Day.
According to the press release issued by the Manipal University, earlier yesterday, over 100 participants comprising families, children and youth and are expected to take part in the summer camp. Various motivational, educational and fun-filled activities have also been planned for the participants.
“Purple Soupa team from Australia will be conducting the activities at the camp which is being partly funded by Novo Nordisk Haemophilia Foundation,” said Annamma Kurien, Associate Dean of Melaka Manipal Medical College, Manipal University. She is also the president of Manipal Haemophilia Society.
Haemophilia, Von Willebrand disease, inherited platelet disorders and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly.
People with bleeding disorders either do not have enough of the particular clotting factor, a protein in the blood that controls bleeding, or else it does not work properly.
There is no permanent cure for this and can only be managed.
The only treatment for Haemophilia is administration of anti-haemophilia factors (AHF), which is exorbitantly expensive and beyond the reach of most persons with Haemophilia. The average cost of treatment is about Rs. 3 lakh per year.
Dr. Kurien, said that while most of the States in the country were providing free anti-haemophilia factors (AHF) for persons with the disorder, Karnataka was not among them.
“The plight of haemophiliacs of Karnataka is grave,” she said.
Voicing Manipal Haemophilia Society’s concern, Dr. Kurien urged the government to provide AHF (Factor VIII, IX, VII and APCC) to all persons with Haemophilia in the State and to ensure its availability in all districts.
It should also include Haemophilia care in the State’s healthcare policy and to ensure prevention of death and disability with an uninterrupted supply of AHF, she said.
The average cost of AHF treatment is about Rs. 3 lakh per year
Courtesy- The News Report