By Dr Rajan Philips -
What connects Genghis Khan, Queen Victoria, Abraham Lincoln, Russian Prince Tsarevitch Alexei and actor Richard Burton? Apart from being great leaders or famous personalities, they had something in common. They were carriers or victims of a major blood disorder called haemophilia.
Today this disorder and other related blood disorders do not receive the kind of attention and care from the medical fraternity the way illnesses like diabetes, cancer and cardiovascular diseases engage their attention. But there was a time when it was known by the lofty sobriquet, the royal diseases since many royal families in Europe had a good number of its members afflicted by this disease.
Today haemophilia is definitely recognised as a key disease at least by the World Federation of Haemophilia (WFH) which is an international non-profit organisation dedicated to improve the lives of people with haemophilia and other genetic bleeding disorders. It has the goal of educating haemophiliacs and harnessing support for better medical care for them. This is a vital service since it is estimated that 75 per cent of those with haemophilia and similar bleeding disorders do not receive adequate treatment.
The WFH was established by Frank Schnabel in 1963 and has its headquarters in Montreal, Canada. Countries numbering 113 are members of this body and is officially recognised by the World Health Organization. (Who). In 1989, WFH established World Haemophilia Day (WHD) as an annual international observance to create awareness, raise funds and enlist public support. The designated date is April 17. This day was chosen in honour of the founder Frank Schnabel’s whose birthday it is.
Every year a particular theme is chosen to provide focus to the observance. The theme for 2012 is ‘Close the Gap’. Some of the earlier themes were: 2009: “Together, We Care”, 2008: “Count Me In” and 2007: “Improve Your Life’
The Day encourages the public to understand and respond to the problem of haemophilia , which is a bleeding disorder. About 1 in 10,000 people are born with it. It must be noted that those with haemophilia do not bleed any faster than other normal people do, but they tend to bleed for a longer time and this could even pose danger to life. Why this happens is that their blood does not have enough clotting factor, which is a protein in blood that controls bleeding.
There are two types of haemophilia. The first is more common and is labelled haemophilia A. This is due to the lack of clotting factor VIII (factor eight). The second form, which is rarer, is called haemophilia B and is found in people who do not have enough clotting factor IX (factor nine). The net result of both conditions is of course the same — the risk of uncontrolled bleeding following even a minor injury or mishap.
More often, the bleeding is internal, into the joints and muscles and is quite spontaneous. Treatment is usually given by injecting the missing clotting factor into veins. With appropriate medical care, haemophilia can be managed effectively.
The ailment is usually inherited just the same way someone inherits his eye or hair colour from his parents. It is found more commonly in men and occurs in 1 in 6,000-10,000 males world-wide.
Women get affected only if their father has haemophilia and their mother is a carrier. A carrier is one who has the haemophilia gene but does not actually suffer from the disorder.
Comprehensive awareness is obviously the key to effective tackling of issues. The sterling role played by WFH and the World Haemophilia Day instituted by it, are truly laudable.
A man too busy to take care of his health is like a mechanic too busy to take care of his tools. — Anon