WHAT YOU SHOULD KNOW ABOUT HEMOPHILIA
Normally, when people injure themselves, their blood clots in a few minutes. This stops the bleeding, and helps the wound heal. The blood is able to clot because it has proteins called clotting factors. A person with hemophilia is missing, or has too little, clotting factors. Without enough clotting factor, the blood cannot clot properly after an injury.
It’s a common myth that people with hemophilia bleed more, or bleed more quickly – but this isn’t the case. But, they do bleed for a longer period of time. This can be a serious issue if someone has a large external wound or internal injuries (inside the body). Minor cuts and scrapes are rarely serious.
However, for a child with hemophilia, a seemingly minor bump may continue to bleed internally, creating a painful and slow-healing injury. Over time, repeated joint bleeding can weaken and damage the joint. The most dangerous internal bleeds occur in the brain, neck, chest, or major organs—these can be life threatening and require immediate medical attention. Bleeds are most commonly treated with clotting factor infusions that replace the clotting factor that is missing, but other treatments may also be used. Factor infusions are used in patients who are appropriate candidates. Some patients receive infusions regularly to help prevent bleeds.
Understanding what causes hemophilia, its symptoms, potential risks for bleeds, and how to treat a bleed are important when caring for a young child or student with hemophilia. Explore this site to learn more about hemophilia and its treatment. Go Back
WHAT YOU CAN DO: FIRST STEPS
As a teacher, coach or daycare provider, there a few steps you need to take to support a child with hemophilia. Rest assured that you will receive support and guidance from the child's parents and Hemophilia Treatment Centre (HTC). Go Back
1. Learn about hemophilia, its symptoms, how it’s treated, and activities that may put a child at risk for a bleed in the setting where you care for them.
➥ If you care for a child in a daycare setting, you know how active and eager to explore they are. Falls and injuries happen – no matter how hard you try to watch over them. Get tips for creating a safe space
➥ In the school setting – especially as children become more involved in sports and other physical activities – it’s important to help kids choose the right activities, and take the necessary precautions to minimize the risk for injury. Two resources can guide you: Hemophilia: What School Personnel Should Know and The Playing it Safe: Bleeding Disorders, Sports & Exercise Guide. Go Back
2. Work with parents to understand the limitations hemophilia puts on their child and which activities pose a higher risk.
➥ Coaches, in particular, should pay close attention to injuries in practice or during games, and work to ensure safe play by all. Parents and healthcare providers can help determine what kind of safeguards, like protective equipment, may be necessary. Click here for School Resource Guides
3. Learn how to recognize the signs of a bleed, what to do and who to contact if one occurs.
➥ Depending on your role, you may be asked to provide information for the child’s bleed records and treatment diaries.
➥ Work with a child’s parents to learn what activities might require a child to get extra infusions in advance, and to confirm with them if they’ve been scheduled. Go Back
GUIDELINES FOR DEALING WITH BLEEDING EPISODES
Here are some important guidelines that may be useful to school personnel and other adults who are regularly involved with a child or teen with hemophilia:
➥ If the child complains of pain, believe them, even if there is nothing to see.
➥ Difficulty moving a limb normally, or excessive pain with or without moving, is a symptom of bleeding.
➥ Be aware that a child might try to hide their symptoms to avoid missing an exciting activity.
➥ Parents should be the first people consulted if you suspect a bleed. Make sure you always have all the parents' contact information on file (home, work, and cell phone numbers, pager number, etc.).
➥ The delay between the beginning of a bleed and the treatment must be reduced as much as possible—prompt treatment is crucial.
➥ Significant trauma to the head, among other injuries, can cause a life-threatening bleed.
➥ You must not "wait and see"—notify parents and emergency medical staff immediately.
➥ Basic first aid care can be administered when a bleeding episode happens—remember the key words Rest, Ice, Compression, and Elevation (RICE).
➥ Treat the child with hemophilia like every other child; avoid treating them in a way that could make them feel different or isolated from the other children. Go Back
CREATING A SAFE DAYCARE ENVIRONMENT
Caring for newborns or toddlers in a daycare is challenging – as they explore everything around them! It’s important to create a safe and nurturing environment. Here are some points to consider:
➥ Encourage all staff to learn the basics of hemophilia
➥ Develop a plan of action for emergencies
➥ Ensure there is sufficient supervision (staff to child ratio)
➥ Make necessary safety adjustments (e.g. eliminating any sharp protruding edges, storing scissors after every use)
➥ Remember to allow a child to explore – just with a few extra precautions. Go Back
DENTAL PROCEDURES AND HEMOPHILIA
Bleeding inside the mouth or gums is a common type of bleed in people with hemophilia. Certain dental procedures (like tooth extractions), which are common in kids, can cause prolonged bleeding in a patient with hemophilia. While the bleeding can usually be managed, by applying direct pressure or with factor infusion treatment complications may arise if the bleeding occurs repeatedly.
For this reason, special care must be taken when treating a patient with hemophilia. If you’re a dental professional, ask parents how severe their child’s hemophilia is, how their child is treated, and what to do in the event of a bleed. If needed, consult their medical care team for more information. Here are a few precautions to keep in mind:
➥ Encourage the child to floss regularly and to brush their teeth with a soft brush. Flossing may cause a small amount of blood to ooze from the gums at first, but as the gums get healthier, the oozing stops.
➥ Before any dental procedures (e.g., fillings, tooth extractions, etc.), talk to parents about any preventative factor infusion treatment or medications such as tranexamic acid that may be needed has been coordinated. Sometimes extensive dental work requires a trip to the operating room for treatments under anesthesia.
➥ Special care should be used when performing routine dental procedures, such as use of saliva ejectors, removal of impressions, and placement of X-ray films, to avoid damage to the oral mucosa
➥ Monitor the child for a period of time after a tooth extraction (for signs of bleeding)
➥ Discuss with parents what treatment should be given should a bleed occur during a dental procedure
For more detailed information, consult The World Federation of Hemophilia Guidelines for Dental Treatment of Patients with inherited Bleeding Disorders. Go Back
ALLIED HEALTHCARE PROFESSIONALS
Allied healthcare professionals are those that provide supportive care that is distinct from medical care. They include physiotherapists, social workers, dental hygienists and psychologists.
Physiotherapists, for example, play an integral role in the care of a person with hemophilia because joint damage is a common complication in people with hemophilia. Physiotherapy can help ease pain and stiffness, and improve overall quality of life.
\It’s important for allied healthcare professionals, patients, and families to work together closely so that a safe and effective treatment plan can be developed. Go Back