Bleeding Disorders Living With

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If you are diagnosed with a bleeding disorder, it is important that you follow your treatment plan, receive routine care, maintain a healthy lifestyle, and learn how to lower your risk of complications. Know what steps you need to take if you have a child with a bleeding disorder. Women with bleeding disorders have unique needs, especially during pregnancy.

How often you see your healthcare provider should depend on your bleeding disorder, your symptoms, and your treatment plan. Even if you do not have symptoms and are not undergoing a treatment, you should see your provider for ongoing care.

• Follow your treatment plan as directed by your provider to prevent complications. Your treatment plan may change over time.
• Keep all your medical appointments.
• Talk to your provider about hemophilia treatment centers, which provide care for people who have bleeding disorders.
• Tell your provider about any changes in your symptoms. Your provider may do some tests to readjust your treatment plan.

After starting treatment, your provider will check to make sure it is working. This may include blood tests right after treatment, and then regularly to see whether there is a change in the levels of clotting factors or antibodies within your blood.

Replacement therapy can cause major complications:

• Viral infections, such as hepatitis C, may occur if the clotting factors come from human blood products. This risk is now very low in fresh frozen plasma and platelet concentrates, because all donors are screened for hepatitis C. The risk is nearly zero for clotting factor concentrates, which are treated to kill viruses or are made in the laboratory instead of from human blood.
• Antibodies that block clotting factors can form because of treatment with clotting factor concentrates. This is more common in people who have bleeding disorders with very low clotting factor levels and people who have had high amounts of factor replacement therapy. Your provider may test you for antibodies regularly or if your treatment does not seem to be working as well. If you have antibodies, your treatment might change to include higher amounts of factor concentrates or bypassing agents.

Your provider may recommend that you adopt heart-healthy lifestyle changes to improve your health and help lower your risk of coronary heart disease, which is very difficult to manage if you have a bleeding disorder.

• Choose heart-healthy foods.
• Aim for a healthy weight.
• Get physically active. Talk to your provider about ways to lower the risk of bleeding while staying active.
• Manage stress.
• Quit smoking. Learn about how smoking affects your heart and tips to help you quit. For free help quitting smoking, you may call the National Cancer Institute’s Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).

• Follow directions for treatment. Replacement therapy is meant to lower the chance of bleeding and bleeding-related complications, such as joint damage. Even if you have joint damage, prophylactic treatment may help reduce the pain.
• Take pain medicine and do physical therapy for pain and swollen joints. Your provider may also recommend anti-inflammatory medicine or surgery for damaged joints.

Bleeding disorders can cause serious and life-threatening problems.

• Bleeding in the brain or spinal cord can cause a hemorrhagic stroke.
• Bleeding in the throat can cause swelling and block the airways.
• Bleeding into the abdomen can cause inflammation and damage nerves.
• Damaged joints and pain from bleeding into joints over time, especially for people who have inherited hemophilia.
• Hard masses in the bones can form from pooled blood.
• Miscarriages can occur because of placental bleeding.

If you have a child with a bleeding disorder, talk with your child’s healthcare team. Get education and support from a hemophilia treatment center, support groups, and camps.

For children with severe hemophilia symptoms, such as heavy internal or joint bleeding, your healthcare provider may recommend replacement factor therapy on a regular schedule to help prevent spontaneous bleeding and to reduce bleeding from injuries.

Your provider may also recommend steps you can take to protect your child at home and in school.

• Consider a medical ID bracelet or necklace for your child to wear.
• Learn how to examine your child for and recognize signs of bleeding.
• Provide your child with extra protection with kneepads, elbow pads, protective helmets, safety belts, and straps.
• Talk with your child’s teachers and coaches about when to contact you and when to call 9-1-1.

Women who have a bleeding disorder have unique risks, such as heavy menstrual bleeding and pregnancy complications. Genetic carriers for hemophilia can also have bleeding complications, such as after childbirth, even though they may not have other symptoms. During pregnancy and childbirth and after childbirth, your healthcare provider may suggest changes in your treatment plan and coordinating care with your hemophilia treatment center.

To stay safe living with a bleeding disorder:

• Talk to healthcare providers, dentists, employers, loved ones, and others about your bleeding disorder and what to do in case of an emergency.
• Talk to your provider about preparing for surgery, as well as potential risks and complications. You may need to take medicine or have replacement therapy.
• Talk to your provider or pharmacist about which medicines are safe for you. Some medicines, such as aspirin or other pain relievers, raise the risk of bleeding.