Just because your sibling has haemophilia and you don’t does not mean that we don’t want to help. You may wonder why your sibling has haemophilia. The reason is that everyone’s genes are different and we are all unique. When there is a history of haemophilia in a family, there is a 50/50 chance that a person will inherit haemophilia.
Haemophilia is a bleeding disorder. This means the blood of a person with haemophilia works differently to most people because they are missing clotting 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. When somebody is missing a factor it takes longer for a clot to form so they will bleed for longer. There are two different types of haemophilia known as haemophila A and haemophilia 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 and severe.
- A person with mild haemophilia has between 5% to 40% of factor in their blood.
- A person with moderate haemophilia has between 1% to 5% of factor in their blood.
- A person with severe haemophilia has less than 1% of factor in their blood.
When someone has haemophilia they might bleed inside or outside of their body. When you cut your finger and you can see the blood outside of the body. This is called external bleeding. Sometimes you can bleed inside your body too. This is called internal bleeding and can happen when someone falls, gets hit or gets a bang. These types of bleeds can happen in the muscles and joints which can be very painful and need to be treated with medicine as soon as possible. The medicine used to help people with haemophilia is called factor and will increase the amount of factor in their blood. This treatment is called prophylaxis. This treatment helps to prevent bleeds from happening. It means that there is enough factor in the blood to help form a clot so if they hurt themselves, they are less likely to have a bleed. Most of the time the treatment works, but sometimes it doesn’t and people need to take more factor to help stop the bleeding.
When a person has a cold they might sneeze or cough, these are signs that they have a cold. People with haemophilia have signs that help them know if they have a bleed. They usually feel pain and the area where the bleed is might swell and become very hot. If a person with haemophilia thinks they have a bleed, they should tell an adult straight away so they can help them take their factor. Sometimes, when a bleed is very bad, your brother or sister might have to go to the hospital to get extra medicine and for some rest. Although you might want to play with your brother or sister, it is very important to let them rest when he has a bleed because if he doesn’t, the bleed could get worse and then he might have to stay in hospital.
When your sibling has a bleeding disorder, you might think that your parents spend more time with your sibling or that he or she gets more attention than you. This can also make you feel angry. If your sibling has a bad bleed and has to spend time in hospital, you might feel scared because you don’t know how long it will take for them to feel better. You can also feel sad because you miss them. If you are feeling sad, scared, happy or angry, it is important to talk to your parents. Telling someone how you feel can help you feel better. How? Because other people feel the same as you. Talking to someone means they understand you, when they understand you they can help you. Sometimes it can be a hug that helps. Other times it might take longer but there is always time for you.