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Haemophilia information for schools

  • Haemophilia is a life-long bleeding disorder where the blood does not clot properly. It is caused by not having enough of a single blood-clotting protein (clotting factor VIII [8] or clotting factor IX [9]) in the blood. Haemophilia can be mild, moderate or severe depending on the level of clotting factor in the blood.

    Haemophilia causes children to bruise easily and bleed more than expected after injury. For more information on the symptoms and treatment for Haemophilia.

    The impact of haemophilia on the student

    The impact of haemophilia will vary depending on the student and the severity of haemophilia.

    For the most part, students with haemophilia will be active and well.

    Severity of bleeding may differ between each person, but all children with haemophilia have the potential to bleed with injury. Most children with severe haemophilia will have treatment at home (prophylaxis) to raise their blood-clotting protein and significantly reduce their risk of bleeding or having ‘a bleed’.

    Signs of a ‘bleed’ include:

    • the child says it hurts (or a young child does not settle as usual)
    • visible bleeding (nose bleed, bleeding from the mouth, deep cut, heavy period)
    • the skin over an injured muscle or joint feels warm and/or appears red
    • swelling (the injured area is larger than the other arm or leg)
    • not able to move arm or leg
    • limping or pain while walking

    It is important to remember that every child’s experience of haemophilia is different and the impact of managing a chronic medical condition and its associated treatment can be large. Ask your student and their family about how haemophilia impacts on their lives and how they would like childcare/school to support them.

    How can teachers/carers help?

    It is important for school/day care staff to be able to recognise signs of bleeding and take appropriate action. Older students can usually tell they are developing a bleed before there are any obvious signs and it is important to acknowledge their concerns.

    A student with haemophilia will NOT bleed profusely from a simple fall in the playground or a minor cut or injury. Standard first aid is the same as for any other student. A knock to the head or major injury requires fast medical attention which may require further health care, including factor treatment. Always contact the child’s parent/guardian immediately after injury.

    Ask the student’s parent/guardian for an action plan from their Haemophilia Treatment Centre for more detail about managing an injury or bleeding.

    Activities and sports

    Children with haemophilia are encouraged to be active in the playground and participate in physical education (PE) classes and appropriate sports. These activities, although they do not come without risk of injury for any child, are important for healthy joints and muscles, motor skill development and socialisation. Strong joints and muscles also help to prevent bleeds.

    The choice of sport can be different for each child with haemophilia. Students who receive factor prophylaxis can adjust their days of treatment according to scheduled sport and PE. If you are unsure if your student should participate in a particular activity, please discuss with the student’s parent/guardian. With permission from the parent/guardian, further advice can be sought from the student’s Haemophilia Treatment Centre.

    As for everyone, students with haemophilia are strongly encouraged to wear standard protective equipment for activities and sport (e.g. bike helmet for cycling, shin pads for soccer).

    Excursions and camps

    Students with haemophilia can attend excursions and camps and will be able to participate in most, if not all activities.

    Young people who require intravenous factor treatment often learn to administer the treatment themselves, typically in late primary school or early secondary school. Managing haemophilia treatment at school camp is an important step towards a young person achieving independence. Ask the student and parent/guardian about any specific requirements that may be needed (e.g. a quiet space for treatment, storage of treatment and injection equipment). The parent/guardian can request a medical plan from the Haemophilia Treatment Centre.

    Absenteeism

    Absenteeism may occur for several reasons:

    • to attend a hospital appointment
    • when there is an injury or bleed or ongoing rehabilitation
    • when students/parents need to attend the hospital for regular treatment or to learn how to give treatment themselve

    Prolonged absence is uncommon but students may need support to catch up with missed school work or tasks.

    Return to childcare/school after a bleed

    Children often need to limit activity after a bleed into a joint or muscle in order to promote recovery and prevent re-bleeding. They may need to return to school wearing a sling, using crutches or a wheelchair which may create anxiety or a reluctance to return to school. Students may not be able to navigate stairs and may need more time or assistance moving between classrooms.

    Missing out on activities or sports due to a bleed and rehabilitation can be disappointing and frustrating for the child. Adapting activities or providing alternatives is important to promote inclusion and a sense of belonging. Regular activities can be resumed when the family communicates that it is safe to do so.

    Communication

    Teachers should discuss potential problems and a plan of action with students and their families.

    There should be a clear line of communication with the parent/guardian in case of a bleed or injury of concern at school. Emergencies are rare.

    Children should not be singled out or treated differently at school because of their haemophilia.

    Some students may be happy to tell their class about haemophilia, others prefer to tell only a select few. Possible ways to involve the class include a show and tell session for younger children, or a science or health project for older students. Speak with your student and parent/guardian about their wishes.

    Home factor treatment can be tailored according to days of highest activity so it is important to communicate with the student and parent/guardian about sporting and PE schedules.

    Key points to remember

    • most students with haemophilia can lead healthy and active lives and participate fully in the school community
    • appropriate activities and sports are encouraged to promote physical and mental health
    • a student with haemophilia will NOT bleed profusely from a simple fall in the playground or a minor cut or injury
    • standard first aid is the same as for any other student
    • a knock to the head or major injury requires prompt medical attention which may require factor replacement
    • ask the student’s parent/guardian for a medical action plan from their Haemophilia Treatment Centre
    • the Haemophilia Treatment Centre is a good source of information
    • in the instance of an injury, contact the parent or guardian immediately

    For more information

    Common questions teachers ask

    Does a child with haemophilia need to go to sick bay after every fall?
    No, not every bump or fall will lead to a bleed (see ‘signs of a bleed’ above)

    Do teachers need to learn how to administer clotting factor?
    No, you will not be expected to give your student an injection.


    Developed by The Royal Children's Hospital Haematology department. We acknowledge the input of RCH consumers and carers.

    Reviewed January 2021.

    Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit www.rchfoundation.org.au


Disclaimer  

This information is intended to support, not replace, discussion with your doctor or healthcare professionals. The authors of these consumer health information handouts have made a considerable effort to ensure the information is accurate, up to date and easy to understand. The Royal Children's Hospital Melbourne accepts no responsibility for any inaccuracies, information perceived as misleading, or the success of any treatment regimen detailed in these handouts. Information contained in the handouts is updated regularly and therefore you should always check you are referring to the most recent version of the handout. The onus is on you, the user, to ensure that you have downloaded the most up-to-date version of a consumer health information handout.