Topic Overview

How can I care for myself?

If you have hemophilia, you can take steps at home to prevent bleeding episodes and improve your health.

• Recognize bleeding symptoms.
• Be active, but exercise with care.
• Don’t take nonprescription medicines unless your doctor tells you to.
• Prevent injuries and accidents around your home.

Recognize bleeding symptoms

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:

• Warmth or tingling in the joint during the early stages of hemarthrosis. This is called an aura. If bleeding is not treated, mild discomfort can progress to severe pain.
• Swelling and inflammation in the joint, caused by repeated episodes of bleeding. If episodes continue, the swelling may lead to chronic pain and destruction of the joint.
• An infant or child not wanting to move an arm or leg because of bleeding into an affected joint. This is often first noticed when a child begins to walk.

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:

• Bruising.
• Swelling.
• Muscle hardening.
• Tenderness.
• Pain, especially when large muscle groups are affected.

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.

Be active, but careful

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:

• Swimming.
• Bicycling (be sure to wear a helmet).
• Walking.
• Tennis.

Sports that are possible but carry an increased risk of bleeding include:

• Baseball.
• Basketball.

Sports that have a high risk for bleeding include:

• Soccer.
• Football.
• Hockey.
• Weight lifting (with heavy weights).
• Wrestling.

Take nonprescription medicine as directed

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:

• Aspirin
• Ibuprofen, such as Advil or Motrin
• Medicines that contain salicylate. This ingredient is closely related to aspirin. Alka-Seltzer, Pepto-Bismol, and many cough medicines contain salicylates.
• Other nonsteroidal anti-inflammatory medicines, such as Aleve. These medicines are designed to reduce swelling and reduce pain.

Prevent injuries and accidents

Because a bleeding episode often begins with an injury, it is important to help prevent falls in the home.

• Remove and repair household hazards that can cause falls, including:
  • Slippery floors. Use nonskid floor wax, and wipe up spills immediately.
  • Poor lighting.
  • Cluttered walkways. Rearrange furniture to keep furniture out of walking paths.
  • Throw rugs. Fasten area carpets to the floor with tape or tacks, and do not use rugs that slip easily.
  • Raised doorway thresholds.
  • Electrical cords. Rearrange cords to keep them out of walking paths.
• Keep furniture or other items that have sharp edges away from normal pathways through your house.
  • Remove square or rectangular coffee tables.
  • Pad the rocks around fireplaces.
• Take precautions when you go outdoors.
  • If you live in an area that gets snow and ice in the winter, have a family member or friend sprinkle salt or sand on slippery steps and sidewalks.
• Check the condition of your shoes on a regular basis.
  • Check the heels and soles of your shoes for wear.
  • Repair or replace worn heels or soles.
  • Wear low-heeled shoes that fit well and give your feet good support.
  • Avoid loose-fitting shoes, which can cause you to lose your balance and fall.
  • Wear slippers or shoes that have nonskid soles.