Raising teenagers with bleeding disorders

The teenage years can be a difficult developmental period where young people struggle to become individuals. It is a difficult time for parents too! You probably remember being a teenager – and testing the boundaries with your parents. Your child may do the same as they enter their teen years. Some may take more risks than others. Striking the balance between laying down the rules and not damaging the relationship with your teenager can be tricky. It is important to try and keep communication open. Pick your battles carefully, there’s only so much you can do as a parent – if your kids test the limits, and push back, it’s something you’ll have to deal with together. What’s key is that taking responsibility for their health remains at the forefront of your child’s mind.

Teenagers with haemophilia usually start to make more of their own decisions regarding the activities they choose and their treatment. Peer pressure can be especially difficult for a teenager who feels ‘different’ because they have haemophilia. This may lead to more risk-prone decisions, such as participating in higher-risk sports, like gaelic football, hurling or rugby. As a parent, it’s important to have a frank discussion with your teen about the potential risks of the activity, and the protective measures (such as special equipment) needed. Together, you can make a decision that helps your teen grow and bond with their friends and minimize risks. As a reference, you can use our ‘Sport and Exercise’ publication.

As teens start to take more responsibility in managing their own care, one of the biggest areas of growth may be learning to self-infuse. This involves the technique itself, plus organizing appointments and follow-up and sticking to the treatment schedule.

As a parent, allowing your teenagers to start making their own decisions, and depend less on you, can be a difficult transition. It can be hard letting go. Again, having an open dialogue with your teen about what it means to manage your own care, and the consequences of not staying vigilant, is important. Also remind them that you’ll always be there for support, whenever they need it. As your teen starts taking on more responsibility, they’ll become more confident – which, in turn, will give you confidence that they’ll be ok.

Teenage years are a time of great physical, emotional and social change for teenagers. There is an increased need for more independence and control over their lives, and to fit in well with their friends. They also take on new responsibilities such as managing their health needs, self-infusions, haemophilia check-ups and school commitments. However, for many children, accurate diary keeping and self-infusion may start at an earlier age. Learning these skills can help increase a sense of control, independence and self-esteem.

But at the same time, the desire to participate in all the same sports and physical activities as other teenagers presents many challenges and can lead to risky behaviour. Fitting in with friends and classmates becomes very important. Teenagers can be very sensitive about their body image. Some teenagers experience anger because they feel different and left out. Some reject haemophilia by ignoring their routine care. Teenagers may feel emotional stress. A child who has been encouraged to talk about his or her feelings, and taught how to take good care of his or her body, will likely be able to deal better with teenage challenges.