Living with haemophilia

LIVING WITH HAEMOPHILIA

People with haemophilia usually receive treatment to protect them from bleeding and the damage that bleeds can cause. Modern treatment allows people with haemophilia to live their lives to the fullest and participate in a full range of activities. This is not limited to physical activities such as playing sports, although this is important. It also means being able to carry out everyday activities, like walking to school, without the worry of a bleeding episode.

Life comes first

Today’s treatments do not need to be prioritised over opportunities. It is possible, for example, for a person with haemophilia to travel or study full time and experience all the opportunities that life has to offer. 

Download our guides for parents and guardians, for helpful tips on protecting your child from bleeding episodes, enabling them to live their lives to the fullest.

Treatment of haemophilia

Today, with modern treatment and education, children born with haemophilia and who have reliable access to treatment, can expect to have the same length and quality of life as children born without haemophilia.

Injecting the missing clotting factor

Treatment of haemophilia consists of injections to replace the missing clotting factor. There are two types of injection approaches:

  • Prophylaxis: regular injections of clotting factor are given to prevent bleeds before they start
  • On-demand: injections are given to stop bleeding when it is already occurring 

People on prophylactic treatment have regular injections to make sure that they have enough clotting factor in their blood to prevent a bleed. The World Federation of Hemophilia guidelines recommend that prophylaxis is the goal of therapy as it decreases the number of bleeding episodes and may protect against joint disease and disruptions to quality of life.

At first, the injections will be given at the hospital or clinic, but later on they may be given at home. Find out more about how to inject clotting factor.

The importance of exercise

Strong muscles are needed to support the joints and provide better balance and bodily control. People with haemophilia should therefore be encouraged to be physically active but must remember to take their medication regularly to ensure they are protected.

Types of clotting factor

Replacement clotting factors can be taken from donated human blood (in which case they are called ‘plasma-derived’) or made in a laboratory using special cells (in which case they are called ‘recombinant’ products). 

Inhibitors

Most people respond very well to treatment. However, for some, their bodies react as if the clotting factor was a foreign substance. Their immune system then develops antibodies known as inhibitors, which means that the injected clotting factor may not work as well or work at all. The antibodies may disappear spontaneously after a period of regular treatment, or a higher dose of the injection may be needed for a period of time. In some people the antibodies remain and their bleeding must be controlled using a different treatment.