FAQs: Younger Schoolchildren
Sending a child with hemophilia off to school raises many questions, so you may find the following frequently asked questions helpful. Just be sure to contact your doctor or Hemophilia Treatment Centre for any medical advice.
- Will a child with hemophilia be safe at school?
- Can children with hemophilia walk to school, go out for recess, or participate in other physical activities?
- How can parents talk to schools and teachers about their child's hemophilia?
- Is protective clothing or a helmet necessary at school?
- How can schools be prepared in case a student with hemophilia has a bleeding episode, or there is an emergency?
- Should parents leave factor treatment at the school in case of a bleeding episode, or provide it to teachers or adults on special school-day outings?
- Should school nurses be trained in how to administer hemophilia factor infusions?
- What can parents and families do if a child tries to hide bleeds?
- Should a child's classmates be told that the child has hemophilia?
- Should siblings be asked to protect a child with hemophilia when they're outside of the home?
- How old should children be to start learning to help with their own hemophilia treatment?
- What treatment or actions need to be taken for a child with mild hemophilia?
- Can young children with hemophilia participate in sports or join sports teams?
- What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with 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. Will a child with hemophilia be safe at school?
A. Parents should rest assured that their child with hemophilia will be as safe at school as any other child. It's just important to share information about the child's condition and needs with school personnel, provide all important contact details, and develop plans of action in case of injuries or emergency situations.
Q. Can children with hemophilia walk to school, go out for recess, or participate in other physical activities?
A. Walking is excellent exercise for all children, including those with hemophilia. If you allow your other children to walk, your child with hemophilia can walk with them. The child can also go out for recess—it is very important for their emotional and social development that they are able to play with their peer group. Just be sure to teach the child the importance of playing safely, and make sure school personnel know what to do if an injury does occur. Child can hemophilia can also participate in most school physical activities, although a few (such as contact sports) may not be appropriate. Your Hemophilia Treatment Centre (HTC) and members of the child's care team can give you and the school guidance about safer and riskier activities.
Q. How can parents talk to schools and teachers about their child's hemophilia?
A. Speak to your child's teacher at the beginning of the school year. It is important to get off to a good start! There are many excellent information booklets, pamphlets, and video and online resources that you can share with teachers. Your hemophilia nurse coordinator can also help with speaking to and educating school personnel.
Q. Is protective clothing or a helmet necessary at school?
A. Generally, by the time they reach their school years, children with hemophilia don't need to wear protective clothing for day-to-day activities. They should, however, always wear a helmet when riding a bicycle and should also wear any specific sports-related protective equipment when participating in those sports.
Q. How can schools be prepared in case a student with hemophilia has a bleeding episode, or there is an emergency?
A. It is very important that the parents and other caregivers work with the staff in the school to educate them on how to recognize a bleed, what to do in case of an injury, and what actions to take in case of an emergency. You should also be sure that the school has all your contact information as well as contact details for the child's Hemophilia Treatment Centre. You'll find information on this website about educating and planning with school personnel, but your child's hemophilia nurse coordinator can also help in this process.
Q. Should parents leave factor treatment at the school in case of a bleeding episode, or provide it to teachers or adults on special school-day outings?
A. No. The risk of losing this expensive treatment is too high. People with hemophilia bleed over a long period of time but very slowly. So in the case of an injury or bleed, parents or other caregivers will have time to stop at home or the Hemophilia Treatment Centre (HTC) to get the child's factor and other treatment supplies before arriving at the school.
If a particular outing or new activity that may create a higher risk of an injury or bleed, parents may want to administer a preventative factor infusion (prophylaxis) the morning of the event. Talk to your nurse coordinator or others at your Hemophilia Treatment Centre about when prophylactic treatment is recommended, and be sure school personnel know to notify you in advance of any relevant activities.
Q. Should school nurses be trained in how to administer hemophilia factor infusions?
A. Generally, no. School nurses often share their time between many schools, and may not have the time to practice and develop the proper skills for administering an intravenous infusion. In the event of an injury or bleeding episode, there will be enough time for the child to receive treatment from a parent or a qualified medical professional.
Q. What can parents and families do if a child tries to hide bleeds?
A. Hiding bleeds can be a common problem among children of this age group—they may worry about being different, or not want to miss a school activity or event in order to get treatment. Parents, other caregivers, and school staff should keep a watchful eye to recognize the signs of bleeds, as well as encourage the child to let them know, always emphasizing the positive side to treatment.
Q. Should a child's classmates be told that the child has hemophilia?
A. Before talking to other classmates and peers, you must be sure that your child with hemophilia feels comfortable letting others know. Once the child is comfortable, offer a simple explanation of the key facts about the condition. Emphasize that the child with hemophilia is just like other children—he just needs to be a little more careful about certain things—and that the condition is non-communicable (that is, others cannot be "catch" it from the child).
Q. Should siblings be asked to protect a child with hemophilia when they're outside of the home?
A. No. Being a brother or sister has its own challenges and rewards. It is too much of a burden for children or teens to feel that they are responsible for protecting another sibling from bleeding episodes. Parents should reinforce the importance of being a good brother or sister, but must avoid giving a child responsibility that is beyond his or her maturity level. Otherwise, siblings could experience strong feelings of guilt when the child with hemophilia experiences bleeding episodes requiring treatment, or resentment at the burden of responsibility placed on them.
Q. How old should children be to start learning to help with their own hemophilia treatment?
A. Every child with hemophilia takes an interest in their treatment at a different point in time, so the exact age will vary with the child's interest, comfort, and maturity level. You should always encourage them to help, starting with simple tasks like getting the factor, opening the boxes, and taking the caps off the bottles. Make the treatment time a special time for you and your child. Your hemophilia nurse can provide many helpful ideas on getting the child more involved.
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. Can young children with hemophilia participate in sports or join sports teams?
A. It is very important for children with hemophilia to be active and participate in activities with other children—although these should be non-contact sports to protect them from injury and bleeds. These kinds of activities not only helps these children physically, by building strong muscles to support and protect their joints, but it also helps them to feel like they fit in with the other children their age—no child with hemophilia wants to feel or appear like they are not "normal."
There are many sports that a child with hemophilia can do safely. With the parents' support and pre-treatment (that is preventative factor infusions) before the activity, the schoolchild with hemophilia can be a valuable member of any team. Coaches and activity leaders should know that hemophilia is a genetic, non-communicable condition, 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.
Q. What precautions do physiotherapists need to know about when working on joint flexibility and other issues in children with hemophilia?
I'm a physiotherapist and have been asked to work with a 10-year-old boy who has hemophilia. His parents said they want me to work on his joint flexibility, especially his ankles. Are there any precautions I should take because of his condition?
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 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.