Hemophilia patients summer camp

Hemophilia patients summer camp

Mangalore Today News Network

Manipal: Hemophilia Society, Manipal chapter, is organising a summer camp at Bharathia Vikasa Trust in Manipal,  for patients from April 17 to 19, as a part of World Hemophilia Day,

The theme for the three-day camp is: "Building a Family of Support". Over 100 participants comprising children and families are expected to take part in the camp. "Purple Soup, a team from Australia will be conducting the activities at the camp which is being partly funded by Novo Nordisk Hemophilia Foundation," according to Dr Annamma Kurien, Associate Dean and Prof of Pathology, MMMC, Manipal University and also the President of Manipal Hemophilia Society.

Hemophilia,  or ’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 Hemophilia is administration of Anti-Hemophilia Factors (AHF), which is exorbitantly expensive and beyond the reach of most persons with haemophilia (PwH). The average cost of treatment is about Rs three lakhs per year.

About government support to persons suffering from the disorder, Dr Kurien said that while most of the states in the country are providing free anti-Hemophilia Factors, Karnataka isn’t helping them. "The plight of hemophiliacs of Karnataka is grave. Untimely deaths and disabilities have drastically increased because of the lack of government initiative to provide consistent treatment to all PwH in Karnataka, she said.