LAHORE: World Haemophilia Day is annually observed on 17th April. It was started by the World Federation of Haemophilia (WFH) in 1989 to increase global awareness of haemophilia and other bleeding disorders. Haemophilia communities around the globe mark the day by helping raise awareness and understanding of the disorder, as well as other bleeding conditions, by conducting activities that emphasise the importance of proper care.
Each year, a number of world landmarks change their lighting to red, the colour associated with awareness of the disease.
Haemophilia is a genetic disorder that impairs the body’s ability to make blood clots, a process needed to stop bleeding. It is caused by missing or defective factor VIII, a clotting protein, which is diagnosed through a blood test. This results in patients prolonged bleeding after an injury, easy bruising and an increased risk of internal bleeding in the joints or the brain. Those with mild haemophilia may only show symptoms after an accident or during surgery. Internal bleeding in the joints can result in a permanent damage while, internal bleeding in the brain results in long-term headaches, seizures or a decreased level of consciousness. The disorder is treated by replacing the missing blood clots. Haemophilia is far more common among males than females. Genetic testing and genetic counselling is recommended for families with haemophilia. It can be diagnosed before, during or after birth if there is a family history of the condition. In Pakistan around 20,000 to 25,000 people suffer from haemophilia.
Haemophilia impacts the physical, emotional and social wellbeing of patients and their families. By working together, we can hope to close the gap in haemophilia care around the world. The slogan for World Hemophilia Day 2017 is ‘Close The Gap’.
The World Federation of Haemophilia tends to reach out to young members of societies to encourage them to actively participate for the cause and support patients. Our government should also provide support by allocating space for treatment centres, providing financial and technical support, and diagnostics and therapeutic modalities.
Dr Zeeshan Khan
Published in The Express Tribune, April 20th, 2017.