“Being on Your Own” Takes on New Meaning for Teens Transitioning to Adulthood

By Mike Rosenthal

The two greatest gifts parents can give their child with hemophilia are to learn to medically care for them and then gradually transfer those skills to their child so they can learn to take care of themselves.

The first gift comes almost naturally. Parents instinctively protect their young. Though bleeding disorders are complicated, challenging, and sometimes scary, parents learn and adapt with each year their child grows, keeping their kids safe, protected, and on track for a successful life.

The second gift does not come naturally. Parents are not instinctively programmed to turn over the responsibility for medically caring for their child to their child. In the bleeding disorder world, we call this process of transferring parental knowledge and power, “transition.” It is setting children on a path to become responsible for their own care.

My love for the bleeding disorder community began 25 years ago when I was recruited to create a summer camp program in Arizona for children living with hemophilia. Since then, whether I was serving as the Executive Director of the Arizona Hemophilia Association or as the National Director of the World Federation of Hemophilia USA, my passion and focus was always on the youth and their families and how to help families navigate this transition and develop interactive programs for them that improved awareness, health, and quality of life.

Since 2008, I have been involved with a program provided to the community by Bayer called Transition Ignition, which is an interactive experience that teaches young people ages 13–19 to put themselves on the road to better, brighter management of their hemophilia. The sessions promote a level of comfort and acceptance with their bleeding disorder, teach skills for managing treatment away from home, and encourage engagement with healthcare providers.

When I meet with a group of parents and teens from the bleeding disorder community, I always begin by asking the teens, “Raise your hand if you are planning to live at home forever?” The answer is usually curious for two reasons. First, there is always one kid who raises his hand because he is truly planning on living at home forever. Second, is the look on parents’ faces when they realize their child has plans to move out, because of aspirations to go off to school, or work, or whatever takes them on the next great adventure in life.
By no means, however, is transition a one way street. It takes parents and teens, working together to make this transition happen. If a teen is reluctant or unwilling, the transition likely won’t be effective. If parents are reluctant or unwilling, the result is probably the same. Both parties have to support each other’s goals.

Parents and children with bleeding disorders form a special bond, often during treatment sessions. As difficult as the process can be at times, infusing your own child is an act born from true love that they know and can feel. It’s often difficult for children (parents too) to give up that time together and encourage children to do it on their own. This apprehension to let go isn’t limited to just infusions. It’s also all the steps like insurance, ordering factor, keeping inventory, and all the other things parents do to keep their loved ones healthy.

Think about all that is involved in learning to manage a bleeding disorder from relationships with the Hemophilia Treatment Center (HTC), compliance with treatment protocols, the changing medical insurance landscape, or what to do in an emergency. When is a teenager, who is planning to go off into the world, supposed to learn how to do all of that?

Transferring the responsibility for medical care from parent to teen is a process, a transition, because there is no way someone can learn it all at once. Teens have to learn it the same way their parents did, a little bit at a time. The real question is, when do you start the transition? The answer is NOW. There are steps to take right now that can jump start the skill set and empowerment for young people to stay healthy and be successful on their own.

I encourage you to talk to your Bayer rep about a Transition Ignition session near you, or find more information at www.LivingwithHemophilia.com.