Elementary & High School
If you're a teacher, coach, school staff member, or other activity leader for a child or teenager with hemophilia, you may have realized that parents are sometimes afraid to cut ties. This apprehension is very normal. Some parents worry about their child's safety at school or in other settings, and the risks of physical activities that they cannot control.
In your role, you can help alleviate the fears of parents and make transitions a little smoother by learning as much as you can about hemophilia. Several other sections of this website provide useful information about what hemophilia is and how it affects patients and their families at different stages of life. Armed with this knowledge, you can reassure parents that you are prepared to deal with their child's condition and can offer the child or teen safe support and encouragement as they develop their independence.
How Hemophilia Affects Children and Teens
Remember that hemophilia is a condition in which patients lack the necessary clotting factor in their blood to stop bleeding. They will stop bleeding eventually—it just takes longer than normal. While most people think of bleeding as external (such as when you cut your finger), with hemophilia the more critical bleeds are internal and most often occur in joints (such as the knee) or in the soft tissue or muscle, as a result of injury.
Myth: People with hemophilia can bleed to death from minor cuts
False. External wounds or cuts are usually not serious. However, internal bleeding can be serious. Internal bleeding can occur in the joints (especially knees, ankles or elbows) and vital organs.
During their school years kids often start participating in more physical activities like sports that may put them at risk of bleeds. Eager to fit in, they may want to get involved in the same activities as their friends—even if those are risky with hemophilia. Teenagers, in particular, may be prone to pushing the limits of their safety.
For a normal child or adolescent, the bumps and bruises of play and sports usually heal easily. But for someone 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. But the most dangerous internal bleeds occur in the brain, neck, chest, or major organs—these can be life threatening and require immediate medical attention.
There is no cure for hemophilia, but patients can get infusions (injections) of factor replacement therapy to control, manage, and sometimes prevent bleeding.
How You Can Help
Discuss with parents the limitations that hemophilia may place on a child's activities, and physical risks of certain activities. You may also want to talk to someone at a Hemophilia Treatment Centre, who can provide guidelines about the safety and risks of different activities. Coaches in particular should pay attention to injury 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.
You should learn how to recognize the signs of a bleed in the child, and what to do (and who to contact) if one occurs. Depending on your role, you may even be taught to administer treatment or asked to provide information for the child's bleed records and treatment diaries. You'll also need to be aware of what activities might require a child to get extra infusions in advance, and be sure to communicate with parents if these are scheduled.
When Might Extra Infusions Be Needed?
A child's doctor may recommend additional infusions on days when the child will have increased activity and a higher risk of bleeds. These might include physical education days, field trips, and planned sports events.
Most of all, do your best to treat the child or teenager with hemophilia the same as their peers. Offer support but also encourage their independence—you'll help them develop the knowledge and self-confidence to manage their condition throughout their adult years.
Guidelines for Dealing with Bleeding Episodes
The following are some key educational points 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 doing that could make them feel different or isolated from the other children.