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FAQs: Adults & teenagers

Teenagers

How can parents and teenagers living with hemophilia come to agreement over the teen’s independence?

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?

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.

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Q. How can teenagers with hemophilia handle threats of bullying?

A.Teens 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.

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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 their 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.

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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. 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 their parents should discuss their 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.

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Q. Can teenagers with hemophilia self-infuse and manage their own treatment?

A.Yes—teenagers with hemophilia can become autonomous. 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.

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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 their child’s particular condition.

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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.

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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 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.

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Young adults

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 disease transmission when using factor treatments? Can they transmit diseases?

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.

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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 their new location in advance of moving—you could help with the research by asking at their old centre. Be sensitive to their new independence—they 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 they have support from their local clinic.

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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 their condition unless they want to. Classmates, colleagues, and others who do know, however, should discuss privately with them what to do in case of injury and make sure they have access to a list of emergency contact details.

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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.

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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 their child’s particular condition.

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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.

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Q. What are the risks of disease transmission when 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 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.

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Adults

What does someone with hemophilia need to consider in choosing a life partner?

What do people with hemophilia and their partners need to know when considering starting a family?

Are exercise and sports safe for someone with hemophilia? Will they cause injury to the joints?

How can joint disease be treated once it has developed in adult hemophilia patients?

What precautions do physiotherapists need to know about when working on joint flexibility and other issues in a person with hemophilia?

What is considered risky behaviour for a person with hemophilia, and why?

What are the pros and cons of disclosing hemophilia to friends, classmates, co-workers, and others?

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?

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.

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Q. What do people with hemophilia and their partners need to know when considering starting a family?

A. Hemophilia is a genetic disease that can be passed on to children through the parents. So the decision whether or not to have children in a family with a history of hemophilia can be a difficult one. Unfortunately, there is no preventative treatment that can eliminate the risk of a baby being born with hemophilia. If it’s the father that has hemophilia, the risks to the future children are lower—sons would be unaffected and daughters would be carriers. If the mother is a carrier, there is a potential for sons to have the disease.

There are many excellent resources available on the genetics of hemophilia as well as counselors who can work with couples to discuss all of their options. Ultimately, the choice is the couple’s—other family members cannot make these decisions and must be respectful. But everyone should be aware that there are many families with hemophilia in their genetic make-up who decide to have children, and who live long and fulfilling lives. Discussion and preparation are the key to successful family planning.

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Q. Are exercise and sports safe for someone with hemophilia? Will they cause injury to the joints?

A. Exercise and physical activity are important for adults with hemophilia. Strong muscles protect and support the joints helping to reduce the risk of bleeding. Exercise develops strength, coordination, and flexibility. These are all necessary to help prevent injury. Exercise also helps to develop good concentration, maintain a strong heart and lungs, and build confidence. People with hemophilia should stick to recommended activities, avoid those considered risky (such as contact sports), and be sure to use any sport-specific protective equipment.

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Q. How can joint disease be treated once it has developed in adult hemophilia patients?

A. Over time, serious or repeated bleeds to joints can cause complications such as pain or difficulty walking. Once a joint has been damaged, it is unlikely that it will ever be as good as new. However, if synovitis (inflammation of the joint’s lining) or a target joint (a joint that bleeds repeatedly and doesn’t heal well) have developed, there are several treatment options.

Prophylaxis may be recommended for a period of three to six months. This means that clotting factor infusions are given on a routine schedule, usually every second day, to prevent new bleeds and allow the joint to heal better. Sometimes an exercise program is also used to strengthen the surrounding muscles and protect the joint from further injury.

Splinting or bracing may also be used to protect the joint. Strengthening exercises are particularly important if a brace is worn because some braces restrict motion and may cause the muscles to weaken.

Steroid injections can be used to speed the healing, usually done by a joint expert such as a rheumatologist or an orthopedic surgeon. Factor treatment is first administered, and then a small needle is used to inject the steroids directly into the joint to settle the inflammation.

A synovectomy is a procedure used to remove the synovium. This can dramatically reduce the number of bleeding episodes, allow some healing, reduce pain, and lessen the severity of damage to the joint surfaces. Over time, a new synovium will grow back. However, synovectomy cannot make the joint like new, nor restore motion that has been lost. There are three types of synovectomy: arthroscopic (or closed), surgical (or open) and radioactive synovectomy. In cases of severe joint destruction and loss of motion, joint replacement surgery may be an option. However, joint replacement cannot be done in young active individuals or children because the materials used to replace the joint wear out.

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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 their child’s particular condition.

Back to top

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.

Back to top

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 their condition unless they want to. Classmates, colleagues, and others who do know, however, should discuss privately with them what to do in case of injury and make sure they have access to a list of emergency contact details.

Back to top

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.

Back to top

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 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.

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Women

What does it mean to be a carrier?

Why should a woman find out if she is a carrier?

What symptoms does a woman with a bleeding disorder usually have?

How can a pregnant woman who is a carrier of hemophilia prepare for the safe delivery of her child?

Q. What does it mean to be a carrier?

A. There are some women who have one hemophilia gene that have more bleeding than a normal person. Usually, women with one hemophilia gene are carriers. A carrier is a woman who doesn’t show any symptoms, but carries the gene mutation for hemophilia and can pass it on to her children. Women who have a family history of hemophilia, or show mild symptoms of a bleeding disorder, may choose to be tested to see if they are a carrier.

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Q. Why should a woman find out if she is a carrier?

A. If your baby or young child is diagnosed with hemophilia in a family with no previous history, healthcare professionals will discuss with you if would like to have genetic testing to determine if someone in the family is a carrier of the hemophilia gene. There are two reasons to test a potential carrier:

  • To measure a woman’s factor level; if it’s low, precautions may be needed to prevent abnormal bleeding
  • To know whether a woman carries the gene for hemophilia

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Q. What symptoms does a woman with a bleeding disorder usually have?

A. The most common symptoms in women with a bleeding disorder include:

  • Heavy or prolonged menstrual bleeding (menorrhagia)
  • Abnormal bleeding after childbirth
  • Easy bruising
  • Frequent and prolonged nosebleeds
  • Prolonged bleeding after dental procedures
  • Abnormal bleeding after surgery or trauma

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Q. How can a pregnant woman who is a carrier of hemophilia prepare for the safe delivery of her child?

A. A pregnant carrier’s physician must know that she is a carrier of hemophilia in order to plan for safety. Most women with bleeding disorders have few bleeding problems during pregnancy or during childbirth. But here are still many other issues to consider during pregnancy, such as the option of prenatal diagnosis, special labour and delivery plans, postpartum care, breastfeeding decisions, and care for the newborn if he or she has hemophilia.

A multidisciplinary approach should be taken to managing pregnancy in carriers of hemophilia. Ideally, the woman and her partner should meet with a hematologist, obstetrician, and genetic counselor to discuss options such as prenatal diagnosis and treatment during delivery, as well as post-natal care. There are many resources available with information specific to carriers, family and pregnancy—the Canadian Hemophilia Society can provide several, as can Hemophilia Treatment Centres (HTCs).

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Aging

What age-related conditions do adults with hemophilia need to be aware of as they get older?

Is sexual dysfunction a concern for older adults with hemophilia?

Q. What age-related conditions do adults with hemophilia need to be aware of as they get older?

A. There are certain conditions people with hemophilia have a higher risk of getting as they age. These include: hypertension (high blood pressure), heart disease, osteoporosis, and kidney disease. Adults with hemophilia should see their doctors regularly to monitor for these conditions in order to manage them appropriately if they arise.

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Q. Is sexual dysfunction a concern for older adults with hemophilia?

A. The added issues often associated with getting older – like high blood pressure, for example – can affect anyone’s sexuality, whether or not they have a bleeding disorder. But people with hemophilia may have added issues that can lead to sexual dysfunction, including lack of libido or impotence. Sexuality may also be affected by chronic infections with hepatitis C or HIV.

Oral medications may be helpful in some cases, but people with hemophilia should beware that these ED treatments may lead to nosebleeds.

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