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Haemophilia

If your child is diagnosed with haemophilia, their recommended treatment plan will depend on how severe their haemophilia is.

The recommended treatment plan for haemophilia depends on how severe the condition is.

There are two main approaches to treatment:

  • preventative treatment – where medicine is used to prevent episodes of bleeding and subsequent joint and muscle damage
  • on-demand treatment – where medicine is used to treat an episode of prolonged bleeding

Haemophilia is usually treated by a team at a specialist haemophilia hospital department.

Preventative treatment

Most cases of haemophilia are severe and need preventative treatment (prophylaxis). This involves regular injections of clotting factor medicine.

If your child has haemophilia, you'll be trained to give them the injections when they're young.

They'll be taught how to inject themselves when they're older to help avoid regular hospital appointments.

In some cases, injections may be given into a device called an implantable port, which can be surgically placed under the skin.

This port is connected to a blood vessel near the heart, so you don't need to try to find a vein for every injection.

People having preventative treatment need regular follow-up appointments with their care team so their progress can be monitored.

Preventative treatment is usually continued for life. It may be possible for someone to change to on-demand treatment, but they may be advised to switch back to preventative treatment if they have any episodes of significant bleeding.

There are different types of haemophilia. This page covers the most common types: haemophilia A and haemophilia B. They have similar symptoms, but need different treatments because different clotting factors are affected. 

Haemophilia A

Preventative treatment for haemophilia A involves regular injections of a medicine called octocog alfa.

This is an engineered version of clotting factor VIII (8), the clotting factor people with haemophilia A don't have enough of. Injections every 48 hours are often recommended.

Side effects of octocog alfa are uncommon, but can include an itchy skin rash, and redness and soreness at the site of the injection.

Haemophilia B

Preventative treatment for people with haemophilia B involves regular injections of a medicine called nonacog alfa.

This is an engineered version of clotting factor IX (9), which people with haemophilia B don't have enough of. Injections twice a week are often recommended.

Side effects of nonacog alfa are uncommon, but include headaches, altered taste, nausea, and discomfort and swelling at the injection site.

On-demand treatment

In mild or moderate cases, treatment for haemophilia may only be necessary as an immediate response to bleeding.

Haemophilia A

People with haemophilia A can be treated on-demand with injections of octocog alfa or a medication called desmopressin.

Desmopressin is a synthetic hormone. Hormones are powerful chemicals that can have a wide range of effects on the body.

Desmopressin works by stimulating the production of clotting factor VIII (8) and is usually given by injection.

Possible side effects of desmopressin include headache, stomach pain, and nausea.

Haemophilia B

On-demand treatment for haemophilia B usually involves injections of nonacog alfa.

Complications of haemophilia

Complications can include developing inhibitors in your immune system, and joint problems.

Inhibitors

Some people who take blood clotting factor medicine develop antibodies in their immune system, called inhibitors, that make the medicine less effective.

People having treatment for haemophilia should be regularly tested for inhibitors.

Inhibitors can be treated with immune tolerance induction (ITI). This involves daily injections of clotting factors so the immune system should begin to recognise them and stop producing inhibitors. 

ITI is usually offered to people with severe haemophilia A. People with haemophilia B may be offered ITI, but it's less effective and carries a risk of anaphylaxis for them.  

People with mild or moderate haemophilia A who develop inhibitors may be offered either bypass therapy or immunosuppressants. 

Bypass therapy uses a medicine called bypass agent to stop bleeding when it happens.

Immunosuppressants are medicines that suppress your immune system.

Joint damage

Joint bleeds can damage the soft spongy tissue in your joints called cartilage, and the thin layer of tissue lining the inside of the joint (synovium). The more damaged a joint is, the more vulnerable it is to bleeding.

Joint damage is more common in older adults with severe haemophilia. It's hoped modern treatments mean children growing up with haemophilia today won't have joint damage.

Surgery can be used to remove damaged synovium so new synovium can grow. Serious damage to a joint may mean it needs to be replaced – for example, a hip replacement or knee replacement.

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