Himalayan News Service

Kathmandu, July 4:

It is estimated that haemophilia, a bleeding disorder, affects one male child in every 10,000, and there are 2,300 people affected by the disorder in the country. In this connection, Nepal Haemophilia Society organised a press meet here today, with the aim of providing up-to-date information and raising awareness about haemophilia. "Haemophilia is a x-linked inherited bleeding disorder caused by the deficiency of factor VIII or factor IX in the blood," said Dr Kiran Manandhar, chairman of the society. "Most children with haemophilia have muscle or joint swelling due to internal bleeding," said Dr Mahesh P Shrivastava, member of the society. Prolonged bleeding may occur from mild injuries or dental procedures, while swelling in the muscles and joints, if not treated in time, can cripple the person. The disorder has been divided into three kinds — mild, moderate and severe. "The treatment of haemophilia is expensive and the facilities are mostly localised in the valley," said Dr Manandhar, adding that an average cost of treatment is usually Rs 1,00,000 per year.

Shova Bhattrai, member of the society, highlighted the significance of physiotherapy for such people to improve their quality of life. The society is a health related, non-profit making and non-government organisation affiliated to the World Federation of haemophilia. The society is formed by a group of voluntary workers who either have haemophilia themselves or are parents of such children. The society aims to provide comprehensive care to people with haemophilia and to unite them into a community motivated for self-help and mutual support. In addition, it offers medical, educational and psycho-social assistance to people with haemophilia and their guardians. While females are rarely affected by the disorder and are just the carriers, the society has come across two women in the country with the disorder.