HealthInfo Canterbury
Haemophilia
Matenga toto tepe-kore
Haemophilia (hee-mo-fill-ee-a) is a rare condition that affects your blood's ability to clot.
When most people cut themselves, clotting factors in their blood combine with blood cells called platelets to make their blood sticky. This makes the bleeding stop.
If you have haemophilia, you're missing a clotting factor in your blood. This means your blood doesn’t clot properly and you bleed for longer than usual.
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 mostly an inherited condition, which means it's passed on from your parents. In some cases, however, it's the result of a brand-new genetic mutation.
Haemophilia is rare and mainly affects males: one in 10,000 males born in New Zealand has haemophilia. Female carriers of haemophilia can also have symptoms ranging from mild to severe.
Symptoms of haemophilia
The symptoms of haemophilia can be mild to severe, depending on the level of clotting factor you have. Someone with haemophilia will inherit a similar level of clotting factor to their parent.
The main symptom is prolonged bleeding. For some people, the bleeding won't stop without an injection of the right clotting factor medicine.
Bleeding can be external or internal:
- External – on the outside of your body, where it's visible. You may notice:
- nosebleeds that take a long time to stop
- wounds and grazes that bleed for longer than expected
- bleeding gums.
- Internal – on the inside of your body, where it isn't seen and is harder to identify. You may notice:
- skin that bruises easily
- tenderness, swelling or stiffness around your joints, such as elbows
- an ache or funny feeling in a joint or muscle.
In babies, the first signs of haemophilia are usually easy bruising or bleeding from their mouth from bites to their gums and tongue.
Diagnosing haemophilia
See your doctor if:
- you or your child bruises easily and has prolonged bleeding
- you or your child has symptoms of joint bleeds, such as tingling, pain or stiffness in the joint, or the joint becomes hot, swollen and tender
- you have a family history of haemophilia and you're pregnant or planning to have a baby, as it's very important that your doctor refers you to a haematologist.
You'll be asked to have a blood test, which can diagnose haemophilia and find out how severe it is.
If there's no family history of haemophilia, it's usually diagnosed when a child begins to walk or crawl. Mild haemophilia may only be discovered later, usually after an injury or a dental or surgical procedure.
Treating haemophilia
There's no cure for haemophilia, but there's treatment that means you can enjoy a good quality of life. With proper treatment, life expectancy for people with haemophilia is the same as those without haemophilia. The aim of the treatment is to reduce the risk of prolonged and excessive bleeding. Bleeding can be controlled by injections of a clotting factor medicine.
Pain relief and physiotherapy are also part of the treatment programme.
Complications with haemophilia
Repeated bleeding in and around your joints causes damage to them. This is similar to the damage and pain caused by arthritis, but with haemophilia you're likely to experience it at an earlier age.
In the past, there has also been the risk of infection from blood-borne viruses. But in New Zealand, blood-donor screening and the use of recombinant factor products have removed nearly all risk of getting viruses through blood products.
Self-care with haemophilia
Good self-care includes:
- avoiding contact sports, such as rugby
- being careful taking other medicines – some can affect your blood's ability to clot, such as aspirin and ibuprofen
- maintaining good oral hygiene and having regular trips to the dentist so you don't develop gum disease (which can cause bleeding).
HealthInfo recommends the following pages
- Haemophilia Foundation of New Zealand
Information and support for people with von Willebrand disease, haemophilia and other bleeding disorders.
On the next page: Treating haemophilia
Content shared between HealthInfo Canterbury, KidsHealth and Health Navigator NZ as part of a National Health Content Hub collaborative. Last reviewed May 2023.
SourcesReview key: HIBLD-52881
