Haemophilia Matenga toto tepe-kore

Haemophilia 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 are missing a clotting factor in your blood. This means your blood does not clot properly and you bleed for longer than usual.


Causes of haemophilia

Haemophilia is mostly passed on from your parents. In some cases, it is the result of a new genetic mutation.

Haemophilia is rare and mainly affects men. 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. If you have haemophilia, you will have a similar level of clotting factor to the parent you inherited it from.

The main symptom is prolonged bleeding. For some people, the bleeding will not stop without an injection of the right clotting factor medicine.

Bleeding can be on the outside of the body or on the inside, where it cannot be seen and is harder to identify.

On the outside of your body, you may notice:

  • nosebleeds that take a long time to stop
  • wounds and grazes that bleed for longer than expected
  • bleeding gums.

On the inside of your body, 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.


Complications of haemophilia

Possible complications depend on where the bleeding is and how bad it is.

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 are likely to experience it at an earlier age.

If you have haemophilia, bleeding can be very serious or fatal in some cases, including if:

  • you have a lot of bleeding (severe bleeding) anywhere in the body and lose a lot of blood
  • you knock you head you can get bleeding inside your head and around your brain.

Diagnosing haemophilia

See your healthcare provider 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 are pregnant or planning to have a baby.

You will be asked to have a blood test, which can diagnose haemophilia and find out how severe it is.

If there is no family history of haemophilia, it is 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 is no cure for haemophilia, but there is 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 bleeding too much or for too long.

There are 2 main approaches to treatment, depending on how severe your haemophilia is.

Treatment for mild haemophilia

If your haemophilia is mild, you may only need treatment if you are bleeding. If you start bleeding, you need to be treated as soon as possible to stop the bleeding and prevent long-term damage.

If you are treating a bleed, you should:

  • inject clotting factor medicine as soon as possible
  • contact your healthcare provider or specialist as soon as possible
  • rest the affected area for one to 2 days to let swelling ease and prevent further bleeding — it is important to start moving the area again after 1 to 2 days of rest
  • apply ice to help reduce swelling, prevent further bleeding and ease pain — use a gel or cold pack or a bag of frozen peas wrapped in a cloth and apply for up to 15 minutes every 2 hours.
  • apply a compression bandage to the affected area to reduce swelling and pain — remove it at night.
  • raise the injured area above the level of your heart for 20 minutes at a time — remove the compression bandage when you elevate your leg to allow for normal circulation.

Treatment for severe haemophilia

You will get regular injections of a medicine that helps your blood to clot (clotting factor medicine) to help prevent episodes of bleeding and prevent joint and muscle damage.

Managing pain

You will need treatment to manage pain, as swelling caused by bleeds, especially in the joints, can be extremely painful. There are some common pain relief medications that you cannot take if you have haemophilia as they reduce blood clotting. These include aspirin and most non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen.

Talk to your healthcare provider about medication that you can take safely.

Physiotherapy

Physiotherapy after a bleed helps with recovery from internal bleeding that may have damaged your joints. Your physiotherapist will give you exercises to get your muscles and joints working again.


Self care for haemophilia

You can look after yourself by:

  • avoiding high contact sports such as rugby and boxing — swimming is a good option as it provides aerobic exercise while the water provides a natural cushion for your limbs
  • being careful taking other medicines — some, such as aspirin and ibuprofen, can affect your blood's ability to clot 
  • maintaining good oral hygiene and having regular trips to the dentist so you do not develop gum disease (which can cause bleeding).