More information about hemophilia becomes available all the time. Check here to see if your question about hemophilia is among the most frequently asked questions.
How is hemophilia diagnosed?
If you or your child has any signs or symptoms of hemophilia, see a doctor immediately. Your doctor will perform a physical examination, take a family history, and, if hemophilia is suspected, order specific blood tests to confirm a diagnosis. These tests examine clotting time and measure whether coagulation factors in the blood are low or absent.7
Can hemophilia be cured?
There is no cure for hemophilia.1 Fortunately, there are treatments proven effective to treat hemophilia for even the most severe forms of the disease.8
What are plasma-derived clotting factor products?
Plasma-derived clotting factor concentrates were the first type of blood products developed. They are produced using the plasma pooled from thousands of blood donors. Plasma is collected, pooled, and processed to separate the desired proteins—in this case, clotting factors.4,9
How safe are plasma-derived clotting factor products?
Several measures are taken to ensure the safety of all blood products, including plasma-derived clotting factor products. Blood donors are carefully screened to eliminate anyone who has been exposed to viral infections such as hepatitis or human immunodeficiency virus (HIV); the blood used to make the clotting factor concentrates is tested for known bacterial or viral contaminants; and, finally, as part of the manufacturing process, these products undergo rigorous chemical and heat treatment steps designed to inactivate viruses, rendering them harmless. Although these measures have improved the safety of plasma-derived clotting factor products, there still remains a theoretical risk of blood-borne substances.4,8,9,19
What is a recombinant clotting factor product?
Recombinant clotting factor products are produced using recombinant DNA technology. The clotting factor is produced without using any human blood or cells. Recombinant clotting factors have been proven to effectively control bleeding in people with hemophilia.10,11,12
How safe are recombinant clotting factor products?
Clotting factor products produced using recombinant technology represent an advance in viral safety. Recombinant technology virtually eliminates the risk of contamination by known blood-borne viruses.10,12 Learn more about the importance of viral safety.
What other steps should a person with hemophilia take to stay healthy?
People with hemophilia should follow basic approaches to maintaining good health. These include preventive care, physical therapy and exercise, and practicing a healthy lifestyle.13
The use of clotting factor to control and prevent bleeding is especially important for the prevention of complications associated with bleeding into joints—a common problem in patients with hemophilia.1,6
Physical therapy and exercise can help improve and/or maintain muscle strength and flexibility. It is especially important that muscles surrounding joints receive appropriate physical therapy and exercise as part of recovery from joint bleeding. Developing strong muscles can actually protect and cushion the joints, resulting in fewer bleeds into the joint. An exercise program that takes safety precautions into account can be developed with a physical therapist.13,14
Appropriate nutrition is important to ensure adequate healing after a bleeding episode or injury. Stress management is also an important component of a healthy lifestyle for patients with hemophilia, as well as their families. Strategies to prevent injury should also be followed. Special attention may be required with regard to sports and travel. In addition, any immunizations that are necessary in young patients with hemophilia, while safe, require special management. Your health care provider can provide you with special instructions.13
Modern management of hemophilia includes prevention as part of the overall treatment plan. Find out how prevention may help you participate more actively in life.23,26
What steps should be taken for keeping a child with hemophilia healthy?
The same basic steps outlined above also apply to children, except that a parent or other caregiver performs daily care activities. During childhood, a child with hemophilia will need to be taught about his or her disease and its management. Gradually, the child will be able to take on some of the self-care needed to address his or her hemophilia.13
Can children with hemophilia participate in childhood activities?
Today children with hemophilia can lead a near-normal life, particularly if they are receiving preventive therapy. Physical activity is encouraged for children with hemophilia, as it helps to build strong muscles. Most children with hemophilia can participate in swimming, bicycle riding (with a helmet), walking, and golf.13 Contact sports such as football, hockey, wrestling, and boxing are not recommended.13,14 Talk with your doctor about safe, appropriate activities.
Where can I get more information about hemophilia care and treatment?
Decisions about patient care must be made with a health care provider who can assess the special needs of each patient. There are education and support groups for hemophilia throughout the country.
Hemophilia Village is a good place to start. You'll find a wide range of information about hemophilia and its treatment, plus programs and services for people with hemophilia.
Another resource is the National Hemophilia Foundation; they have valuable information and can put you in touch with your local hemophilia chapter. You can visit their Web site at: www.hemophilia.org or call them at: 1-800-42-HANDI.
The health information contained herein is provided for educational purposes only and is not meant to replace personal discussions between health care providers and patients. All decisions about patient care must be made with a health care provider who can assess the special needs of each individual patient.
|
