Hemophilia

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KEY POINTS

• Hemophilia is a bleeding disorder that is usually inherited. It is a rare condition that does not allow your blood to clot normally.
• Treatment depends on the type of hemophilia and whether your child has mild, moderate, or severe hemophilia. You may use pressure dressings on your child's minor cuts, and give your child medicines to help his body form clots.
• Your child should carry an ID card or wear a medical ID bracelet or necklace that says he has hemophilia.

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What is hemophilia?

Hemophilia is a bleeding disorder. It is a rare condition that does not allow your blood to clot normally. Hemophilia may be mild, moderate, or severe.

What is the cause?

Hemophilia is usually inherited, which means that it is passed from parents to children through their genes. Genes are inside each cell of your body. They contain the information that tells your body how to develop and work.

There are several proteins in your blood called clotting factors that cause your blood to clot after an injury. When you have hemophilia, your body is missing one of the blood-clotting factors or has very little of a blood-clotting factor.

• Hemophilia A is the most common form. It happens when clotting factor VIII is low or missing.
• Hemophilia B, also called Christmas disease, is the second most common form of hemophilia. It happens when factor IX is low or missing.

Hemophilia is much more common in males than females. The disease can be passed to children by mothers who do not have symptoms. A man with the disease can pass the genes to his daughters, but not his sons. All of his daughters will be carriers of the hemophilia gene and may pass it on to their children.

In rare cases, hemophilia can be caused by a disease such as diabetes, cancer, liver infections, blood diseases, or an autoimmune disease (a disease that causes your body to mistakenly attack your own tissue).

What are the symptoms?

The main symptom is bleeding that lasts longer than normal after injuries or surgery. Your child may also have internal bleeding, especially into the joints (knees, ankles, and elbows). The first signs in your child may be:

• Bruising beneath the skin as a child starts to crawl or walk
• Bleeding gums when the child gets new teeth

Other examples of abnormal bleeding are:

• A lot of bleeding or bruising after minor injuries
• Easy bleeding, such as nosebleeds
• Bleeding in the mouth from a cut or bite or from losing a tooth

How is it diagnosed?

Most people with hemophilia are diagnosed in the first 2 years of life. The diagnosis is based on family history, unusual bleeding, and blood tests. In some cases, especially if the symptoms are mild, the diagnosis may not be made until a child is several years old.

How is it treated?

There is no cure for hemophilia but there are treatments. Treatment depends on the type of hemophilia and whether it is mild, moderate, or severe hemophilia. Treatments may include:

• A man-made product or a product made from donated blood to replace the missing blood-clotting factor, which is called replacement therapy
• Treating minor cuts with a bandage and pressure on the wound. If the bleeding does not stop, you will need to get instructions from your provider or go to the emergency room.
• Medicine that helps your body make the missing blood-clotting factor
• Pain medicine for painful joints

If you have lost a lot of blood, you may need a blood transfusion.

Hemophilia treatment centers are located in many areas of the US. These centers provide treatment, education, and support to people who have hemophilia and to their families.

How can I take care of my child?

• Make sure your child gets regular exercise such as biking, swimming, and walking. This will keep your child’s muscles strong and protect the joints from injury. Your child should avoid contact sports, such as football, hockey, or soccer, and other activities that are more likely to cause internal bleeding.
• Make sure your child uses the right safety gear for sports when practicing as well as when playing. Check outdoor play areas for possible dangers.
• Don’t give aspirin, ibuprofen, or naproxen to your child. These medicines can increase the risk for bleeding. Also, children and teens who take aspirin are at risk for a serious illness called Reye’s syndrome. Give acetaminophen when your child needs pain medicine. Acetaminophen may cause liver damage or other problems. Read the label carefully and give your child the correct dose as directed. Do not give more doses than directed. To make sure you don’t give your child too much, check other medicines your child takes to see if they also contain acetaminophen. Unless recommended by your healthcare provider, your child should not take this medicine for more than 5 days.
• Make sure your child has regular check-ups, and stays up to date on immunizations.
• Make sure that your child brushes and flosses his teeth daily. There may be some bleeding at first, but as the gums get healthier, the bleeding should stop. Let your child's dentist know that your child has hemophilia. Notify your healthcare provider or hemophilia treatment center before any dental procedure. Your child may need treatment before the procedure to prevent bleeding.
• Make sure your friends, family, teachers, and coworkers know that your child has hemophilia.
• Your child should carry an ID card or wear a medical ID bracelet or necklace that says your child has hemophilia. If your child needs emergency care, surgery, or lab tests, this helps the healthcare provider know how to treat your child.

For more information, contact:

• National Institute of Health
  301-592-8573
  https://www.nhlbi.nih.gov/
• The National Hemophilia Foundation
  800-424-2634
  https://www.hemophilia.org