WHAT YOU SHOULD KNOW:
Hemophilia is a bleeding disorder caused by a problem in your blood's ability to form a clot. Hemophilia causes you to bleed more and longer than normal. Certain blood cells and substances normally form clots and stop you from bleeding too much. These include platelets, clotting factors, vitamin K, and fibrinogen. Platelets are a type of blood cell that helps form blood clots. Clotting factors are proteins that work with platelets to clot the blood. Hemophilia usually occurs only in men.
Follow up with your primary healthcare provider as directed:
Write down your questions so you remember to ask them during your visits.
Certain blood cells, called factor concentrates, help the blood to clot and the bleeding to stop. With severe hemophilia, this treatment may be scheduled for 2 or more times each week. You may also need this treatment if you have sudden bleeding. Blood cells are given through an IV. In some cases, blood cells are given through a central venous catheter, which is a tube placed in a large vein near your neck. You may also get blood cells through a port, which is a small device placed under your skin. These blood products can be given to you at your home by a caregiver. Ask your primary healthcare provider how to care for a central venous catheter or a port. You must care for the device properly to prevent serious problems.
- Exercise: Exercise regularly and stay at a healthy weight. Exercise may help keep your muscles flexible and help prevent damage to muscles and joints. Always check with your primary healthcare provider before you start any exercise program. You may need physical and occupational therapy. With these therapies, caregivers will help you exercise safely, and teach you skills to help with your daily activities.
- Sports: Do not play contact sports, such as football and basketball. Contact sports increase your risk for bruising and bleeding. Talk to your primary healthcare provider about the best sports and activities for you.
- Dental care: Keep your teeth and gums healthy. Ask your primary healthcare provider if certain therapy or medicines should be given before you have your teeth cleaned. The amount of your clotting factor may also need to be increased before you have dental work. Check with your primary healthcare provider before you have any dental work.
- Vaccines: Ask your primary healthcare provider if you should get vaccines against hepatitis A or B virus, or other infections. Although blood products are carefully screened, a condition called hepatitis can be spread through treatment with blood and blood products. These vaccines will decrease your risk of hepatitis.
- Learn more about hemophilia: The more you know about hemophilia, the better you will be able to take care of yourself. Ask your primary healthcare provider how you can learn more about your condition. Tell him if you are a woman who plans to have children, and you carry the hemophilia gene.
Self-care during bleeding episodes:
Call your primary healthcare provider right away if you are bleeding. You may need extra treatments with blood products.
- Bleeding in your mouth: Keep frozen popsicles in your home. If you are bleeding from your mouth, place a popsicle in your mouth to help stop the bleeding. Do not swallow the blood.
- Blood in your urine: If you have pain in your pelvic area or blood in your urine, rest in bed for 2 days. Drink plenty of liquids. Ask your primary healthcare provider how much liquid to drink each day and which liquids are best for you.
- Open skin wounds: Ask your primary healthcare provider how you should clean the wound. Place pressure on the area to help stop or slow the bleeding.
- Bleeding in a joint: If you have a painful and swollen joint, put an ice pack on it. If the joint is on your arm or leg, prop it on pillows or blankets to keep it elevated comfortably and rest the body area. Wait until the pain has gone away before you move and use the joint again. See your primary healthcare provider if the pain is not gone in 3 days.
- Nosebleeds: Breathe through your mouth and lean forward to stop blood from going down the back of your throat.
Medical alert identification:
Wear medical alert jewelry or carry a card that says you have hemophilia. Ask your primary healthcare provider where to get these items.
For support and more information:
- National Heart, Lung and Blood Institute
Health Information Center
P.O. Box 30105
Bethesda , MD 20824-0105
Phone: 1- 301 - 592-8573
Web Address: http://www.nhlbi.nih.gov/health/infoctr/index.htm
Contact your primary healthcare provider if:
- You cannot make it to your next visit.
- You are nauseated or vomiting.
- You feel very tired and weak.
- You get an injury, such as a sprained ankle, or an open skin wound.
- You have a fever.
- You have a new or unusual headache.
- You have joint pain that lasts longer than 3 days.
- You have new pain and swelling in a body area.
- You have questions or concerns about your condition or care.
Return to the emergency department if:
- You are vomiting blood.
- You cannot control your bleeding episodes, even after treatment.
- You bump or injure your head.
- You have a seizure.
- You are bleeding from an injury to your throat, neck, or eyes.
- You have chest pain or shortness of breath.
- You have new large bruises on your body, or sudden swelling.
- You have new pain in the lower part of your stomach, groin, or lower back.
- Your urine is pink or red.
- You see blood in your bowel movement, or it is black.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.