Claims and facts about haemophilia

There are many misconceptions about haemophilia.

If a person with haemophilia cuts himself, he bleeds to death.

Not all bleeding is life-threatening. Normally, bleeding can be stopped very well. It is different with internal bleeding. These can be dangerous. Therefore, the haemophilia center or your doctor should be informed of any bleeding.

All people with haemophilia are direct descendants of Queen Victoria of England.

There are two types of haemophilia: haemophilia A and haemophilia B. Queen Victoria was a carrier of the gene for haemophilia B: this involves a deficiency of clotting factor 9 (FIX). She passed the gene on to three of her nine children. This is how haemophilia B was also passed on to the ruling dynasties of Russia and Spain, for example.

The severity of haemophilia is the same in all sufferers.

The severity of haemophilia depends on the amount of clotting factor that is still present in the body. Haemophilia is then classified as mild, moderate or severe.

You are not allowed to travel with haemophilia.

You are allowed to travel with haemophilia - even abroad. You must always take enough of your medication with you. Please check beforehand whether you still need forms from your doctor for air travel. Your haemophilia centre can also give you some tips, where you can go in an emergency.

Haemophilia only affects boys and men.

Haemophilia is caused by a change on the so-called X chromosome. Men only have one of them, women two. Therefore, women usually still have an unchanged X chromosome that can take over the function of the other one. This is not possible in men. That is why haemophilia mostly affects men.

In people with haemophilia, joints can break down over time and then you can't move well.

People with haemophilia can have bleeding in the joints, such as the knee. If this happens very often, the joint can be damaged. With regular treatment with medication, you can prevent these bleedings as far as possible and the joint remains healthy.

People with haemophilia do not live as long as people without haemophilia.

You can live as long as people without haemophilia. Today there are very good medicines to treat haemophilia. It is important that you always take the medication and go to your doctor or centre for regular check-ups.

In children with haemophilia, the disease always runs in the family.

Haemophilia is usually inherited within a family. In one third of newly diagnosed haemophilic children today, there are no haemophilic ancestors in the family. The haemophilia here comes about through a sudden change in the genes (mutation).

All forms of haemophilia are caused by a deficiency of clotting factor 8 (FVIII).

A deficiency of clotting factor 8 (FVIII) is only responsible for haemophilia A. It is the most common form of haemophilia, accounting for about 80% of all cases. It is the most common form of haemophilia, accounting for about 80% of all cases. However, there is also haemophilia B. This is caused by a deficiency of factor 9 (FIX) and affects about 20 % of people with haemophilia.

People with haemophilia only bleed externally, for example from a cut or graze.

People with haemophilia can also bleed in places that are not visible from the outside. These can happen for no particular reason or when you are playing with your friends. Joints such as knees, ankles and elbows are most often affected.

Haemophilia can be cured.

Haemophilia itself cannot yet be cured. It is caused by a small change in your genes. With your medication, you can make sure that you have only a few restrictions in your everyday life due to haemophilia.

People with haemophilia are not allowed to play sports.

Exercise and sport is important for health and joints. With their medication, people with haemophilia can do many different types of sport. Your doctor can help you choose the type of sport you want to do.

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