Teenagers
Adolescence, which occurs between the ages of 13 and 17, is the period between the onset of puberty and the beginning of adulthood. The teenage years can be a struggle for parents and children alike because they both go through an important transition: the shift from dependency to letting go.
For teenagers with hemophilia, this journey towards independence is even more complicated. Their physical needs and responsibilities are more challenging than those of others. Having a rare chronic disorder may separate teens from others their own age, making them feel different at a time when fitting in is what they strive for most. Parents and family members need to strike a balance between offering support and encouragement while allowing the teen to find his own way.
Testing Limits, Accepting Responsibility
Adolescence is also a time when children test their limits. Parents may set the limits, but they are not always around to monitor their teen's behaviour. Some children become risk takers, while others understand the risks and dangers of certain activities and avoid them. Teenagers will suffer the consequences of the choices they make, but parents must let them learn their own limits, because their child may rebel if kept too protected.
Teenagers with hemophilia usually start to assume some responsibility for their health and begin to make their own decisions. But adolescents want to do what their friends are doing—and these may not always be the best choices for those with hemophilia. For example, participation in organized sports may become a problem, if the teen becomes interested in a higher-risk activity like football or rugby. Parents should encourage participation as long as appropriate care is taken and protective equipment is worn. Ultimately, the adolescent must decide if what they want is worth the risks—such extra infusions they may need, or the pain they may suffer if they get hurt.
Supporting Teens Toward Independence
The teenage years are about developing independence and learning to make their own decisions—so now is the time to encourage them to start managing their own hemophilia care. The biggest step is learning to self-infuse, along with taking responsibility for follow-up care, making and keeping appointments, and sticking to their treatment schedule.
For parents, allowing their teenagers—who were previously so dependent—to make their own decisions will be a difficult change. But this is a time for parents to learn to let go, while still being there for support when needed. Parents must communicate clearly, but allow their growing child to learn and take responsibility for their own life. By encouraging independence and responsibility, you'll help your teenager develop the knowledge and self-confidence to manage their condition throughout their adult years.
It's natural to have lots of questions about the care and treatment of your or your loved one's teenager. You'll find a great deal of useful information on this website, but just remember that for medical advice, always contact your doctor, nurse coordinator, or other Hemophilia Treatment Centre staff member.