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 doctor will depend on the severity of your bleeding disorder, your symptoms, and which treatments you are using. Even if you do not have symptoms and are not undergoing a treatment, you should see your doctor for ongoing care.

• Follow your treatment plan as directed by your doctor to prevent complications. Your treatment plan may change over your lifetime.
• Keep all your medical appointments.
• Talk to your doctor about hemophilia treatment centers, which provide care for people who have bleeding disorders.
• Tell your doctor about any changes in your symptoms. Your doctor may do tests to determine whether your treatment plan needs to be adjusted.

After starting treatment, your doctor 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, which can include:

• 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 can form because of treatment with clotting factor concentrates. The formation of antibodies is a complication that occurs more often in people who have severe bleeding disorders and those who have had high doses of replacement therapy. Your doctor 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 doses of replacement therapy or a different type of replacement therapy called bypassing agents.

Your doctor may recommend that you adopt lifelong heart-healthy lifestyle changes to improve your health and help reduce your risk of coronary heart disease, which is very difficult to manage in people who have a bleeding disorder.

• Choose heart-healthy foods. 
• Aim for a healthy weight.
• Get physically active. Talk to your doctor about how to reduce the risk of bleeding while staying active.
• Manage stress.
• Quit smoking. Visit Smoking and Your Heart and the National Heart, Lung, and Blood Institute’s Your Guide to a Healthy Heart. For free help quitting smoking, you may call the National Cancer Institute’s Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).

To prevent or treat complications, your doctor may recommend the following.

• 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 pain.
• Take pain medicine and do physical therapy for pain and swollen joints. Your doctor may also recommend anti-inflammatory medicine or surgery for damaged joints.

Severe bleeding disorders can cause serious and life-threatening problems, including:

• Bleeding in the brain or central nervous system, which can cause a hemorrhagic stroke
• Bleeding in the throat that can cause swelling and block the windpipe
• Bleeding into the abdomen, which can cause inflammation and damage to nerves
• Damaged joints and pain from bleeding into joints over time, especially for people who have inherited hemophilia
• Hard masses in the bones from pooled blood
• Miscarriages

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 moderate to severe hemophilia, your doctor may recommend replacement factor therapy on a regular schedule to help prevent spontaneous bleeding and to reduce bleeding from trauma. Your doctor 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 children with extra protection in the home and elsewhere 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 doctor 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 doctors, dentists, employers, loved ones, and others about your bleeding disorder and what to do in case emergency action should be taken.
• Talk to your doctor about preparing for surgery, as well as the potential risks and complications. You may need to take medicine or have replacement therapy.
• Talk to your doctor or pharmacist about which medicines are safe for you to take. Some medicines, such as aspirin or other pain relievers, increase the risk of bleeding.