World Haemophilia Day 2014 is held on 17 April with the slogan Speak Out. Create Change. It focuses on encouraging especially young people with the disorder to speak out about the disease and to rally support for sufferers.
Learn more about this disorder through these frequently asked questions.
Question: What is haemophilia?
Answer: Haemophilia is a hereditary bleeding disorder that results in excessive, often spontaneous and also internal bleeding in muscles and joints, causing severe pain and sometimes damaging limbs. People with haemophilia do not bleed faster than normal but bleed for longer periods of time.
Question: Who is at risk of the disease?
Answer: The disorder is hereditary but can also result from genetic mutation. Approximately 0.01% of any given population will have haemophilia.
Question: Is gender an issue?
Answer: Mostly males are affected, with females being the carriers of the affected gene.
Question: What causes haemophilia?
Answer: Clotting factors are substances in the blood that act in sequence to stop bleeding by forming a clot. People with haemophilia lack an essential blood clotting factor.
Question: Is there more than one type of haemophilia?
Answer: There are two types:
-
- People with haemophilia A, the most common form also known as classical haemophilia, lack clotting factor 8.
-
- Haemophilia B occurs in people who lack clotting factor 9.
Question: Can haemophilia be cured?
Answer: No, there is no cure for haemophilia. It is a lifelong disorder.
Question: How is haemophilia diagnosed?
Answer: Blood tests are done, also to determine which clotting factor is lacking. The disease usually is not evident before the age of 9 months.
Question: How is it treated?
Answer: Medical treatment is relatively simple: the deficient protein (clotting factor) is extracted from donated blood and given to haemophiliacs through blood transfusions.
Question: Are haemophiliacs at risk of other disease?
Answer: Because they have to have blood transfusions, haemophiliacs were at greater risk of being infected with HIV through contaminated blood. Methods of screening and testing blood have vastly improved over time and no case has been reported in recent years.
Question: Does haemophilia affect life expectancy?
Answer: Because of advances in medicines and treatment, haemophiliacs now have a greatly increased life expectancy and most live close-to normal lives.
Sources
www.haemophilia.org.za
www.wfh.org
www.who.int