FAQs: Teenagers
The teenage years pose many challenges for families living with hemophilia, so you may find the following frequently asked questions helpful. Just be sure to always contact your doctor or Hemophilia Treatment Centre for any medical advice.
- How can parents and teenagers living with hemophilia come to agreement over the teen's independence?
- What treatment or actions need to be taken for a child with mild hemophilia?
- How can teenagers with hemophilia handle threats of bullying?
- How can parents and caregivers help teenagers with hemophilia overcome their shyness or get more involved with their peers?
- Can teenagers with hemophilia participate in sports or join sports teams?
- Can teenagers with hemophilia self-infuse and manage their own treatment?
- What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?
- What treatment or actions need to be taken for a child with mild hemophilia?
- What are the risks of using factor treatments? Can they transmit diseases?
- If someone with hemophilia needs a blood transfusion, do they need to worry about the safety of the blood supply?
Q. How can parents and teenagers living with hemophilia come to agreement over the teen's independence?
A. Independence is a challenging notion for people of all ages who are living with hemophilia, as they will always require some degree of assistance from family, their comprehensive care team, and even from time to time the emergency department to help them with both acute and long-term issues. Understanding when to turn to others is part of the process of growing, maturing, and gaining independence.
Parents need time to let go—they are used to being needed! They need to know that teenagers still want their encouragement and support, even as they are striking out on their own. Teenagers need to learn to ask for more independence slowly and earn their parents' trust. By learning to make the right choices and demonstrating that they are taking care of their health needs, teens will build self-confidence and earn their parents' trust.
Q. How can teenagers with hemophilia handle threats of bullying?
A. Teems with hemophilia need to be especially careful to avoid physical altercations. It's a good idea for them to practice ways to avoid risky situations—for example, by showing no emotion to the bully and then walking away, or asking for help from someone else to avoid putting themselves in danger. There are many books and articles available for dealing with bullies and for help with problem-solving—remember, the best choices are made when armed with the most information.
Q. How can parents and caregivers help teenagers with hemophilia overcome their shyness or get more involved with their peers?
A. No teenager wants to feel different from his or her classmates, but hemophilia can underscore these feelings. Don't try to force them into situations where they don't feel comfortable, but it may be helpful to assign team projects so they can work alongside other teens, and hopefully, build closer relationships. Focus as well on the teen's strengths and capabilities in order to help them develop self-confidence, social skills, and increasing independence. Encourage them to pursue activities they enjoy and show aptitude for, as well as take responsibility for their own health. Their confidence and comfort will start to shine through with your trust and encouragement.
Q. Can teenagers with hemophilia participate in sports or join sports teams?
A. It is very important for adolescents with hemophilia to be active and participate in activities with their peers (although not all sports are recommended). These kinds of activities not only helps the teens physically, by building strong muscles to support and protect their joints, but it also helps them to feel like they fit in with the others their age—no teen with hemophilia wants to feel or appear like they are not "normal."
There are a lot of misconceptions surrounding hemophilia.
A. People often think that a person with hemophilia will bleed to death if they get a cut. This is not true. It does take them longer to stop bleeding, but with the proper treatment the bleed will eventually stop. Coaches and activity leaders should know that hemophilia is a genetic, non-communicable condition that can be managed, and they should be encouraged to learn more about the disorder and what kinds of activities are safe and risky. There is a lot of useful information on this website, as well as many printed and other online resources available.
Before joining a team, the teen and his parents should discuss his limitations and treatment needs with coaches and other personnel. Preventative treatment infusions (prophylaxis) may be recommended before activities to reduce the risk of a bleeding episode. Sport-specific protective equipment is also a must.
Q. Can teenagers with hemophilia self-infuse and manage their own treatment?
A. Yes—the majority of people with hemophilia become totally autonomous when they are teenagers, in general between the age of 13 and 15 years. When they are ready to start self-infusing, their Hemophilia Treatment Centre (HTC) can provide training as well as practice infusion resources. Adolescence is also a good time for children to start taking more responsibility for their health overall, including learning to make smart and healthy choices, making and keeping medical appointments, maintaining their own treatment diary, and more.
Q. What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?
A. It's important that physiotherapists understand the medical background of a child with hemophilia, and how the condition can lead to the development of joint disease and pain. There are many helpful resources on the subject, both online (including this website) and in print. The child's parents should refer the physiotherapist to their Hemophilia Treatment Centre (HTC) for consultation with the HTC team prior to working with the child—this will ensure the best treatment plan and therapies for the child's particular condition.
Q. What treatment or actions need to be taken for a child with mild hemophilia?
A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.
Q. What are the risks of using factor treatments? Can they transmit diseases?
A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.
As a result, in Canada:
- Since 1988, there have been no HIV infections in people with hemophilia from factor concentrates
- Since 1990, there have been no hepatitis C infections in people with hemophilia from factor concentrates
Q. If someone with hemophilia needs a blood transfusion, do they need to worry about the safety of the blood supply?
A. The modern factor concentrates used in Canada today, whether plasma-derived or recombinant, have never been known to transmit diseases like HIV, hepatitis B, or hepatitis C. Hepatitis B infection occurs in only about 1 in a million blood transfusions. Those with hemophilia have a greater chance of needing a blood transfusion, but the risk of acquiring Hepatitis B need not be a concern since because they will have been vaccinated against the virus.
For people with hemophilia who received blood products in the 1970s and 1980s, hepatitis C (for which there is no vaccine available) was a serious concern. However, today donor screening methods and viral inactivation procedures have reduced the risk of being infected with hepatitis C to near zero. Fortunately, HIV infection through factor concentrates is also a thing of the past.
It is possible that a new unknown agent could infect the blood supply. But those responsible for hemophilia care and for the blood system, including the CHS, consumer groups, the blood transfusion service (Canadian Blood Services) and organizations around the world, are watchful of new dangers and take their responsibility for the safety of blood products very seriously.