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My child has just been diagnosed with Haemophilia – will they need treatment?

My child has just been diagnosed with Haemophilia – will they need treatment?

Most people with haemophilia need treatment at some point. How regularly depends on whether they have mild, moderate or severe haemophilia. Your child will have a blood test to find this out.

Haemophilia means your child’s blood has a lower than normal level of one of the body’s essential clotting factors. It they have less than 1% of normal, they have severe haemophilia. If they have more than 5% of the normal level, their haemophilia is mild.8 People with between 1% and 5% of the normal clotting factor level have moderate haemophilia.8

People with severe haemophilia and some people with moderate haemophilia need regular injections of the clotting factor their body is lacking They usually have these injections into a vein (intravenously) about 2 or 3 times a week. 18 Young children may also be offered a central venous access device (CVAD) such as a Port-A-Cath to make infusions easier.19 This treatment is called ‘prophylaxis’ (pronounced prof-ill-ax-iss) and the aim is to prevent bleeding. They will also need extra treatment before an operation or having a tooth out.

People with mild or moderate haemophilia may also need preventative treatment before surgery.20 They may be able to have tablets or a nasal spray to stop bleeding, rather than injections of clotting factor.21,22,23

Even with regular preventative treatment, people with severe haemophilia can have bleeding episodes, usually after a knock or accident but sometimes for no obvious reason. People with mild and moderate haemophilia may also have bleeds after an accident or injury. If anyone with haemophilia has a bleed into a muscle or joint, they will need injections of clotting factor until the bleeding is under control. Bruises and minor cuts will often get better on their own but signs of a more serious bleed can include:9

  • Stiffness of a joint
  • Tingling or pins and needles
  • Heat
  • Swelling
  • Pain

If in doubt, seek medical help sooner rather than later.