Haemophilia - Overview

Overview-Haemophilia




Haemophilia is a rare condition that affects the blood's ability to clot. It's usually inherited, and most people who have it are male.
Normally, when you cut yourself, substances in the blood known as clotting factors combine with blood cells called platelets to make the blood sticky. This makes the bleeding stop eventually.
People with haemophilia don't have as many clotting factors as there should be in the blood. This means they bleed for longer than usual.

Symptoms of haemophilia

The symptoms of haemophilia can be mild to severe, depending on the level of clotting factors you have.
The main symptom is bleeding that doesn't stop, also called prolonged bleeding.
People with haemophilia may have:
  • nosebleeds that take a long time to stop
  • bleeding from wounds that lasts a long time
  • bleeding gums
  • skin that bruises easily
  • pain and stiffness around joints, such as elbows, because of bleeding inside the body (internal bleeding)
Read more about the symptoms of haemophilia.

When to get medical advice

See your GP if:
  • you or your child bruises easily and has bleeding that doesn't stop
  • your or your child has symptoms of joint bleeds – for example, tingling, pain, or stiffness in the joint, and the joint becoming hot, swollen, and tender
  • you have a family history of haemophilia and you're pregnant or planning to have a baby
Find out more about how haemophilia is inherited.
There's a small risk people with haemophilia may have a bleed inside their skull.
Symptoms of this include:
  • a severe headache
  • a stiff neck
  • vomiting
  • a change in mental state, such as confusion
  • speaking difficulties, such as slurred speech
  • changes in vision, such as double vision
  • loss of co-ordination and balance
  • paralysis of some or all of the facial muscles
Call 999 for an ambulance if you think someone's bleeding inside the skull.

Your local haemophilia centre

People with haemophilia should register at their local haemophilia centre, as this is a useful source of advice and support.

Tests and diagnosis

Blood tests 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.

Genetic tests and pregnancy

If you have a family history of haemophilia and you're planning to get pregnant, genetic testing and counselling can help determine the risk of passing the condition on to a child.
This may involve testing a sample of your tissue or blood to look for signs of the genetic mutation that causes haemophilia.
Tests during pregnancy can diagnose haemophilia in the baby. These include:
  • chorionic villus sampling (CVS) – a small sample of the placenta is removed from the womb and tested for the haemophilia gene, usually during weeks 11-14 of pregnancy
  • amniocentesis – a sample of amniotic fluid is taken for testing, usually during weeks 15-20 of pregnancy
There's a small risk of these procedures causing problems such as miscarriage or premature labour, so you may want to discuss this with your doctor.
If haemophilia is suspected after your child's born, a blood testcan usually confirm the diagnosis. Blood from the umbilical cord can be tested at birth if there's a family history of haemophilia.

Treatments for haemophilia

There's no cure for haemophilia, but treatment usually allows a person with the condition to enjoy a good quality of life.
Genetically engineered clotting factor medicines are used to prevent and treat prolonged bleeding. These medicines are given as an injection. 
In milder cases, injections are usually only given in response to prolonged bleeding. More severe cases are treated with regular injections to prevent bleeding.
Read more about treatments for haemophilia.

Living with haemophilia

With treatment, most people with haemophilia can live a normal life.
However, you should:
  • avoid contact sports, such as rugby
  • be careful taking other medicines – some can affect your blood's ability to clot, such as aspirin and ibuprofen 
  • maintain good oral hygiene and have regular trips to the dentist
Looking after your teeth and gums helps avoid problems such as gum disease, which can cause bleeding. Most non-surgical dental treatment can be carried out at a general dental practice.
Your care team at the hospital can offer advice about surgical dental procedures, such as having a tooth removed, and further information and advice about living with haemophilia.

Information about you

If you have haemophilia, your clinical team may pass information about you on to the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS).
This helps scientists better understand the condition. You can opt out of the register at any time.
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