World Haemophilia Day
April 17 is World Haemophilia Day. The theme for 2022 is “Access for All: Partnership, Policy, Progress. Engaging your government, integrating inherited bleeding disorders international policy”. By raising awareness and bringing haemophilia and other inherited bleeding disorders to the attention of policymakers, we can increase sustainable and equitable access to care and treatment.
What is haemophilia?
Haemophilia is a bleeding disorder. There are different kinds of bleeding disorders. The two most common are haemophilia and von Willebrand disease. For most people, clotting factors in the blood combine with blood cells called platelets to make blood sticky. This makes the bleeding stop eventually, either when the skin is broken (leaving a scab and possibly a scar), or when there has been a significant knock to the body (leading to a bruise).
With haemophilia, a clotting factor is missing in the blood. This means the blood doesn’t clot properly and bleeds continue for longer than usual. It is also very possible that bruises appear much more frequently and with much gentler knocks..
The two most common types of haemophilia are:
- Haemophilia A – this is the most common type and is caused by a factor VIII deficiency. Recent studies indicate that around 87% of haemophilia cases globally are haemophilia A.
- Haemophilia B – the second most common type is caused by a factor IX deficiency (sometimes known as Christmas Disease).
Haemophilia is an inherited condition, which means it is passed on from your parents. It is rare and mainly affects males: 1 in 10,000 males born in New Zealand has haemophilia. Female carriers may have mild symptoms and, very rarely, severe symptoms.
Haemophilia is a lifelong condition but it can be managed so that you can live a normal life. There are two main approaches to treatment, depending on the severity of your condition:
- preventative therapy – where regular injections of clotting factor medicine are given to help prevent episodes of bleeding and prevent joint and muscle damage
- on-demand therapy – where an injection of clotting factor medicine is given in response to a bleed.
You will also need treatment to manage pain, as swelling caused by bleeds, especially in the joints, can be extremely painful. You will also need treatment to manage pain, as swelling caused by bleeds, especially in the joints, can be extremely painful.
How you can support
Donating blood or plasma helps to treat those with haemophilia. To do this you can phone NZ blood on 0800 448 325 to find out your nearest donation centre and opening times.