FAQs: Young Adults
You'll find useful information on hemophilia during young adulthood in the following frequently asked questions, but for medical advice, be sure to always contact your doctor or Hemophilia Treatment Centre.
- What is considered risky behaviour for a person with hemophilia, and why?
- How can family and friends support a loved one with hemophilia who is moving away from home for the first time?
- What are the pros and cons of disclosing hemophilia to friends, classmates, co-workers, and others?
- What career choices and options are there for people with hemophilia? What restrictions will they face?
- What does someone with hemophilia need to consider in choosing a life partner?
- What precautions do physiotherapists need to know about when working on joint flexibility and other issues in a person with hemophilia?
- What treatment or actions need to be taken for someone 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. What is considered risky behaviour for a person with hemophilia, and why?
A. "Risky" behaviour for someone with hemophilia is anything that puts them at risk of injury. It's important to weigh the benefits and consequences of these behaviours—including the possibility of less likely, but more serious, injuries such as to the head and neck. If someone with hemophilia chooses a risky behaviour, they need to realize that choosing to take some actions now can prevent them from participating in something else enjoyable later on.
Q. How can family and friends support a loved one with hemophilia who is moving away from home for the first time?
A. Encourage the young adult to find a Hemophilia Treatment Centre (HTC) in his new location in advance of moving—you could help with the research by asking at his old centre. Be sensitive to his new independence—he should be the one responsible for making contact and setting up appointments. But you can bring the topic up gently and emphasize that you and other loved ones would feel more comfortable knowing that he has support from his local clinic.
Q. What are the pros and cons of disclosing hemophilia to friends, classmates, co-workers, and others?
A. The reactions of people differ upon learning someone they know has hemophilia. People sometimes have a fear of the unknown; they may treat the person with hemophilia differently upon learning of their status. On the other hand, the open and honest communication can often help people to develop closer relationships.
Not disclosing hemophilia can cause tricky situations—for instance, what to say when invited to participate in contact sports or other risky behaviours? But ultimately, the decision to disclose is entirely the affected individual's, and it should not be made by anyone else, including university staff or a manager at work . A person with hemophilia does not put anyone else at risk by working or socializing with them, and therefore should not have to reveal his condition unless he wants to. Classmates, colleagues, and others who do know, however, should discuss privately with him what to do in case of injury and make sure they have access to a list of emergency contact details.
Q. What career choices and options are there for people with hemophilia? What restrictions will they face?
A. Hemophilia does not prevent people from having fulfilling careers and lives—but they do need to be realistic when making career decisions. They will have to choose a career that will not compromise their health, so extremely physical roles are not appropriate. Location is also a consideration, as they'll need to work somewhere where they have access to an emergency clinic.
Q. What does someone with hemophilia need to consider in choosing a life partner?
A. Hemophilia is a genetic disorder that can be passed on to children. So a spouse or life partner needs to be able to accept this situation and the risks, as well as talk openly about planning a family. Genetic counselors can help with these conversations. A partner of someone with hemophilia also needs to be prepared for the potential lifestyle implications that come with treatment of a bleeding disorder, from more frequent medical appointments to restrictions on certain risky activities.
Q. What precautions do physiotherapists need to know about when working on joint flexibility and other issues in a person with hemophilia?
A. It's important that physiotherapists understand the medical background of someone 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 patient should refer the physiotherapist to their Hemophilia Treatment Centre (HTC) for consultation with the HTC team prior to starting—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 someone with mild hemophilia?
A. A person with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the person suffers an injury, they should call their nurse coordinator for advice, and if necessary, go 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.