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Hemophilia


Hemophilia is an inherited disease in which your blood does not clot. People with hemophilia lack or have low levels of one of two blood-clotting substances, known as factor VIII and factor IX. As a result, they may bleed for a long time after an injury. They may also experience internal bleeding, especially in the joints. There are two types of hemophilia -- type A and type B -- but the symptoms are the same in both types. Hemophilia is the most common inherited bleeding disorder. About 18,000 people in the U.S. have the condition.


Signs and Symptoms

Hemophilia may be accompanied by the following signs and symptoms:


What Causes It?

Hemophilia is an inherited disorder that almost exclusively affects men. Women rarely have the disease but are the carriers who can pass the condition to their male children.


Who's Most At Risk?

Hemophilia affects people from all ethnic groups. All the daughters of men with hemophilia will be carriers. However, even if hemophilia runs in the family, only about half the sons of carriers will have hemophilia.


What to Expect at Your Provider's Office

Often the first sign that an infant has hemophilia is deep and easy bruising as the child is learning to crawl. For male children, heavy bleeding after circumcision may be the first sign. Cases of mild hemophilia may be diagnosed even later, after a tooth is extracted or following surgery. Your health care provider will take a family history and do a physical examination, checking for deep bleeding, muscle spasms, limited joint motion, joints that are warm and enlarged, and bruises. Blood tests can show whether clotting factors are low or missing. Computed tomography (CT) scans and magnetic resonance imaging (MRI) may be used to find bleeding in the joints.


Treatment Options

Prevention

Hemophilia cannot be cured, but a test can determine whether an unborn baby will have the disorder. If a person has hemophilia, the following cautionary measures should be taken:

Treatment Plan

The primary treatment for moderate to severe hemophilia is factor replacement therapy, which involves replacing the blood's deficient clotting factor. It can be given to stop bleeding or as preventive therapy, to keep bleeding from starting. Regular infusions of clotting factor several times a week reduces the risk of bleeding. Infusions can be given at home. A health care provider may also prescribe pain relievers. If internal bleeding has damaged joints, physical therapy or, in severe cases, joint replacement may restore function.

Drug Therapies

A health care provider may prescribe the following medications:

Surgical and Other Procedures

Certain types of surgery may become necessary, including:

Complementary and Alternative Therapies

Hemophilia should be treated with conventional medications. Always get medical help immediately when you have bleeding or have joint pain or swelling. Some CAM therapies may be helpful when used with conventional care for certain symptoms. For example, emotional and psychological stress has an effect on the amount of bleeding, and some mind-body therapies may help relieve stress and anxiety. Studies even suggest that hypnosis may reduce (but not eliminate) the need for blood transfusions.

Self Hypnosis

Several preliminary studies suggest that those who have learned self-hypnosis need far fewer blood products over an extended period of time (namely 2 - 3 years) than those who have not learned the technique. One study included relaxation training along with hypnosis. Published and unpublished reports on individual patients also suggest that hypnosis may help blood clot better and may reduce the need for blood transfusions.

Nutrition

No studies have examined the link between nutrition and hemophilia. However, it would be wise to avoid supplemental vitamin E and fish oil if you have hemophilia, as they seem to increase bleeding time by keeping platelets from clumping. Vitamin K plays a role in normal clotting and may be useful either from dietary sources or in supplement form, but research is needed in this area. Do not take vitamin K supplements without first talking to your doctor.

Herbs

No studies have examined the value of herbs for hemophilia specifically, and you should never use herbal therapies without your doctor's supervision. However, based on their own experience, health care providers may recommend herbs that strengthen blood vessels and act as astringents (causing contraction) to make bleeding less severe, such as the following:

In addition, people with hemophilia should avoid the following herbs, which tend to make bleeding more severe:

Homeopathy

Few studies have examined the effectiveness of specific homeopathic remedies. However, several case reports found that the following remedies were helpful for people with hemophilia and even reduced their need for blood-clotting substances like factor VIII. Before prescribing a remedy, homeopaths take into account a person's constitutional type -- your physical, emotional, and intellectual makeup. An experienced homeopath assesses all of these factors as well as any current symptoms when determining the most appropriate remedy for a particular person.

Acupuncture

Acupuncture is not recommended for people with hemophilia because of the risk of bleeding. If you choose to try acupuncture, work with a trained, licensed acupuncturist who has experience dealing with hemophilia. Non-invasive acupuncture, such as laser acupuncture, may be better for those with hemophilia.

Physical Medicine

Regular exercise can build strong muscles and help prevent joint problems. People with hemophilia can do most kinds of exercise safely, although they should avoid contact sports. Physical therapy may also play an important role in reducing joint problems caused by repeated bleeding in those areas. The following exercises may be recommended by your physical therapist:

Work with your health care provider to develop a program that is best for you. The routine should be used for at least 6 - 9 months to treat chronic joint inflammation and to prevent severe bleeding.


Prognosis/Possible Complications

Most people who have hemophilia can manage their condition and lead normal lives. In people who do not receive factor replacement therapy, however, complications include the destruction of bones and joints, life-threatening cysts, bleeding in the brain, gangrene, bleeding into muscles causing damage to nerves, chronic bruising, and anemia. Sudden bleeding can occur with emotional stress.


Following Up

Your health care provider will want to see you every 6 - 12 months. Your health care provider may also suggest centers where you can receive a range of treatments and learn more about how to manage your condition.


Supporting Research

Beers MH, Porter RS, et al. The Merck Manual of Diagnosis and Therapy. 18th ed. Whitehouse Station, NJ: Merck Research Laboratories; 2006:1085-1086.

Behrman RE, ed. Nelson Textbook of Pediatrics . 15th ed. Philadelphia, Pa: W.B. Saunders Co; 1996.

Blumenthal M, Goldberg A, Brinckmann J, et al., eds. Herbal Medicine: Expanded Commission E Monographs . Newton, Mass: Integrative Medicine Communications; 2000.

Buzzard BM. Physiotherapy for prevention and treatment of chronic hemophilic synovitis. Clin Orthop . 1997;343:42-46.

Hoots WK. Hemophilia and related conditions. In: Rakel RE, ed. Conn's Current Therapy . 51st ed. Philadelphia, Pa: W.B. Saunders; 1999.

Hunton M. Homoeopathy in the treatment of haemophilia. Br Homeopath J . 1991;80:82-100.

Jonas WB, Jacobs J. Healing with Homeopathy: The Doctors' Guide. New York, NY: Warner Books; 1996: 256.

Koh TC. Acupuncture therapy in hemophilia. Am J Acupunct . 1981;9(3):269-270.

LaBaw W. The use of hypnosis with hemophilia . Psychiatr Med . 1992;10(4):89-98.

Lee GR, ed. Wintrobe's Clinical Hematology . 10th ed. Baltimore, Md: Williams & Wilkins, Inc.; 1999.

Lusher JM, Arkin S, Abildgaard CF, Schwartz RS. Recombinant factor VIII for the treatment of previously untreated patients with hemophilia A: safety, efficacy, and development of inhibitors. N Engl J Med . 1993;328(7):453-459.

Swirsky-Sacchetti T, Margolis CG. The effects of a comprehensive self-hypnosis training program on the use of Factor VIII in severe hemophilia. Int J Clin Exp Hypn . 1986;34(2):71-83.

Ullman D. Homeopathic Medicine for Children and Infants. New York, NY: Penguin Putnam; 1992: 54.

Ullman D. The Consumer's Guide to Homeopathy. New York, NY: Penguin Putnam; 1995: 224, 325-326, 332, 336.


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