Haemophilia

What is haemophilia?

Haemophilia is an inherited bleeding disorder – meaning that it’s passed on from parent to, mainly male, children. The disorder causes problems with your blood clotting, which can cause spontaneous bleeding and bleeding after injuries or surgery that’s difficult to stop.

Usually, when you cut or injure yourself, substances in your blood (called clotting factors) mix with your blood cells (called platelets) to make your blood clot. This eventually forms a scab to stop a wound from bleeding out.

In patients with haemophilia, some of these factors are missing, so the blood is unable to or takes longer to properly clot. Haemophilia A is a lack of factor 8 and B is a lack of factor 9.

What are the symptoms of haemophilia?

As haemophilia is a disease that runs in the family, it’s often spotted at birth. In newborn babies, there can be some symptoms that can indicate haemophilia, including:

• Severe vomiting caused by bleeds on the brain

• Feeling hot and swollen, with stiffness in the joints

In adults, the key symptoms of haemophilia include:

• Small cuts that cause a lot of bleeding and take a long time to stop

• Bruising easily

• Pain and stiffness in the joints and muscles caused by bleeding

• Frequent nosebleeds and bleeding gums

How common is haemophilia?

Haemophilia A affects 1 in 5,000 male births but haemophilia B is more rare, affecting 1 in 25,000 male births. It mostly affects men and is very rare in women.

What causes haemophilia?

Haemophilia is an inherited condition, so it’s passed on from parents to their children. It is a recessive condition, so parents can carry the genes for haemophilia without actually having the disease itself.

Rarely, a person can develop haemophilia spontaneously, without having any previous link with this condition. Experts think it may then be caused by other medical conditions, like cancer, rheumatoid arthritis and Sjögren’s syndrome.

How is haemophilia diagnosed?

If you suspect you or your baby has haemophilia, speak to a doctor. They will ask you some questions about the symptoms and explore your concerns. If they suspect you have haemophilia, they can confirm this with a blood test.

If you have haemophilia and you are worried about passing the faulty gene to your baby, it is important to talk with your haemophilia team or GP for advice. Doctors can take a sample of blood from the umbilical cord and test your baby for the condition.

How is haemophilia treated?

Although there’s no cure for haemophilia, there is plenty of advice and support available to help improve your quality of life.

A doctor can support you throughout the condition, but you can also register at your local haemophilia centre – which can be a useful source of advice and support. 

You can also receive artificial clotting factor injections to help prevent or stop severe bleeds.

If you have haemophilia, there are some key factors to be mindful of:

• Try to avoid contact sports that may increase your chance of injury, like rugby or boxing.

• Be careful with medication like aspirin or ibuprofen, as they can affect the blood’s ability to clot.

• Take care of your teeth and gum health, and visit a dentist regularly.

When should I seek urgent help?

If you have a bad headache with neck stiffness, vomiting, confusion and/or double vision, call 999 for immediate medical care. These symptoms may indicate an internal brain bleed which needs urgent attention.

When should I speak to a doctor?

Speak to a doctor if you experience any of the following:

• You have a bleed that doesn’t stop

• You get tingling, pain or stiffness in any of your joints and these feel hot, swollen or tender

• You have haemophilia and you’re pregnant

How can Livi help?

If you suspect you have symptoms of haemophilia or are struggling with living with the condition, a Livi doctor or therapist can help. They can talk through your symptoms and refer you to the best specialist help and support.