If you have hemophilia, you can take steps at home to prevent bleeding episodes and improve your health.
Many people who have hemophilia know when they are bleeding even before there are many symptoms.
Bleeding in a joint
Bleeding into a joint (hemarthrosis), often without an injury, is the most common bleeding problem in people who have severe hemophilia. Bleeding usually occurs in one joint at a time. Bleeding may occur in any joint, but knees, elbows, and ankles are most commonly affected. Sometimes one particular joint, called a target joint, will tend to bleed most often.
Symptoms of bleeding into a joint include:
Bleeding in a muscle
Another common symptom of hemophilia is bleeding into a muscle (hematoma), which can be mild or severe. There are many possible symptoms of bleeding into muscle, including:
It is important to begin infusion with clotting factors as soon as possible after a bleeding episode has started, before any physical signs develop. Even with treatment, bleeding is sometimes hard to control. Frequent bleeding episodes or a serious injury can lead to complications and excessive blood loss.
Work with your doctor to make a plan for what to do if you or your child has a bleed.
People who have hemophilia can help prevent bleeding episodes by choosing appropriate exercises that keep their muscles and joints in good shape. Exercise helps keep muscles flexible and strong and helps control weight, lessening the likelihood of a bleeding episode. Before you or your child participates in any sport, the family needs to learn how to administer clotting factors at home. Injuries can then be treated quickly. The sooner a bleeding episode is treated, the less damage bleeding will do to muscles and joints.
People who have hemophilia need to be careful when they participate in certain activities in order to prevent injury and serious bleeding. Stretching and warming up with a few minutes of gentle exercise are important because muscles will be less likely to be pulled or torn and therefore less likely to bleed.
Some exercises and sports carry more risk for bleeding than others. Some people who have hemophilia participate in any sport, regardless of the risk, because they infuse with clotting factors beforehand.
It can be very hard to try to restrict your child with hemophilia from playing a sport or being in an activity, especially when many of his friends are doing it. Like most children, your son may be most concerned with "fitting in." This conflict can be very hard for you and frustrating for your child. Doctors who specialize in hemophilia can often help you and your child handle this sensitive situation.
Sports and activities that are typically recommended for adults and children who have hemophilia include:
Sports that are possible but carry an increased risk of bleeding include:
Sports that have a high risk for bleeding include:
Follow your doctor's directions to take nonprescription medicine for pain relief. You might have pain caused by bleeding into the muscles and joints. Pain is a common problem, and it is necessary to try to control it carefully.
Doctors often recommend acetaminophen, such as Tylenol, for pain relief in people who have hemophilia. Although acetaminophen does not reduce swelling, it is safer than other medicines. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin and ibuprofen, can cause bleeding in the stomach or intestines, interfere with blood clotting, and affect the function of the cells that first plug a wound (platelets). Acetaminophen does not have these side effects. Be safe with medicines. Read and follow all instructions on the label.
Medicines that people with hemophilia should not take include the following:
Because a bleeding episode often begins with an injury, it is important to help prevent falls in the home.
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