Haemophilia (He – moe – fill – e – a) is a bleeding disorder. It means your blood works differently to most people because you are missing a factor.
What is a factor?
Blood is made up of 13 factors which work together to form a clot. A clot is a plug which forms when we cut ourselves and stops the blood from leaving our body, because you are missing a factor this means it takes longer for a clot to form so you bleed for longer.
How Do you prevent bleeding?
By taking treatment 1 or 2 times a week, this is called prophylaxis (Pro – fill – axe – is). This treatment adds more factor to your blood so if you do hurt yourself a clot can form.
There is another treatment for people with severe factor VIII deficiency available in Ireland. This treatment, called Hemlibra, and mimics the effect of factor VIII. It can be infused weekly or every 2 weeks subcutaneously (under the skin).
Are there different types of haemophilia?
Yes, there are two types of haemophilia known as A or B. Haemophilia A is when a person is missing Factor VIII (8) and Haemophilia B is when a person is missing Factor IX (9).
There are also different levels of haemophilia: mild, moderate (mod-or-it) and severe (siv-ear).
- A person who does not have haemophilia has between 50% – 100% of factor in their blood.
- A person with mild haemophilia has between 5% to 40% of factor in their blood.
- A person with moderate haemophilia has between 1% – 5% of factor in their blood. A person with severe haemophilia has less than 1% of factor in their blood.
How do you get haemophilia?
Haemophilia is something you are born with and which you will have for your whole life.
When a boy is born with haemophilia there can be another member of your family who has haemophilia too, like your uncle or your grandfather. This type of haemophilia is called inherited (in – hair – it – did). The reason it is known as inherited haemophilia is because it is in your family before you were born. Everyone inherits things from their family like hair colour or eye colour.
Sometimes, you are the very first person with haemophilia in your family. This is called spontaneous haemophilia (sp-on-they-knee-us). It’s a bit like magic, and like magic nobody knows why it happens.
why do my brothers and sisters not have haemophilia?
Usually only boys have haemophilia, but sometimes not very often, girls can also get haemophilia. These are extra special girls. If you have a sister she may not have haemophilia, but when she gets older she might have a son who has haemophilia.
Even though haemophilia mainly happens in boys it doesn’t mean you and your brother(s) will both have haemophilia.