Haemophilia & You

If you have haemophilia, there is lots of information on this website that can help you to continue to live a healthy normal life.

Just because you have haemophilia doesn’t mean it has to affect how you live your life. With correct and careful treatment, it is possible to ensure it has very little impact on your life

Introduction to Kid-K

Kid-K

Just like you, I have haemophilia so I need to have regular treatments to keep me healthy.

A few weeks ago, either my parents or my friend, Nurse Gemma, would give me my regular treatments. Because I had to be at home or near Gemma for all of my treatments, I couldn’t go on trips with my friends – rubbish! That was before I learnt how to inject myself. There are special devices available which helped me to learn how to treat myself (self-infuse) so that I can now go on trips with my friends. Just speak to your haemophilia centre for further advice and practise on how to treat yourself.

Explaining haemophilia

If you have haemophilia and you hurt yourself, your blood cannot clot properly by itself and so you may keep bleeding. The reason that your blood does not clot properly is that your body does not make something called a Clotting Factor.

There are lots of different types of Clotting Factors, which are something that the body normally makes to help your blood clot. Kids with haemophilia, like us, don’t make enough of one of the Clotting Factors or don’t make it at all.

The good news is that scientists have come up with a way of making Tons of Clotting Factor, which is exactly what your body needs to stay healthy, so you can play sports and do most of the stuff your friends do. Now, when you need some Clotting Factor, you just take an injection and you’re good to go!

Why do I need to inject Clotting Factor so often?

The amount of clotting factor in your blood goes down really quickly!

  • After an injection, there is lots of Clotting Factor in your blood
  • During the day, your body uses it up
  • Within a few days, there is very little or no Clotting Factor left in your blood

You might think that if you don’t have enough Clotting Factor, all you need is one injection containing lots of Clotting Factor and then you would be OK. Unfortunately, this isn’t the case. From the moment that you inject Clotting Factor, your body starts to use it up. Most of it is used up within the day you injected it.

The best time of the day to top up your Clotting Factor levels is usually in the morning before you go to school, especially if you have sports that day.

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