Being a teenager is difficult enough, but being a young male teenager with haemophilia is challenging. Whilst parents need patience, a sense of humour and a bottomless bank account, their son needs both the security of home and the space to grow to the independence of adult life.
Most young adults and teenage boys will have learnt everything they need to know about their haemophilia before puberty. They should be in command going into adolescence, should know exactly when to ask for treatment, know the dose, know how to mix their concentrate, and self-infuse. They should be in a position to then forget about it and get on with their far more exciting life with their friends at home and school.
If this has not happened haemophilia can make adolescence very difficult for a while. Children can be angry and frightened, so it is very important for families to allow their children take responsibility for their haemophilia as they gradually grow up.
The knowledge that haemophilia is inherited and that the abnormal gene can be passed on to children is bound to colour attitudes to sex and parenthood. Young men who have not yet come to terms with their haemophilia feel more different than is usual in adolescence, and may find early courtship difficult because of this.
During the teenage years, most young people make their first escape from parents and siblings. Holidays abroad, summer camps and trips with school all provide the necessary inducements. Haemophilia is not a bar to travel. Again a common sense attitude will ensure that the trip is a happy one.
Finally, after surviving adolescence, the young man with haemophilia wants nothing more than to live his life his own way, and this is something that should be encouraged at an early age. For some parents, it is difficult to let go, but it is a necessary part of becoming an adult. Give your child the room to make mistakes and to learn from them. In this way, he will also learn to become responsible for himself. This includes managing his haemophilia.