Common Questions About Hemophilia B
What is a bleeding disorder?
What is hemophilia B?
What is the incidence of hemophilia B?
How do you get hemophilia B?
What causes hemophilia B?
Who is at risk for hemophilia B?
What are the symptoms of hemophilia B?
How do I know if I have hemophilia B?
How is hemophilia B treated?
What are the different levels of hemophilia B?
Why are males more likely to have hemophilia B than females?
Can you get hemophilia B later in life?
Is hemophilia B contagious?
What is the difference between hemophilia B and hemophilia A?
What are inhibitors?
What is an HTC?
Are there support groups available for people with hemophilia B?
What is a bleeding disorder?
A bleeding disorder is a broad term for medical conditions in which blood cannot clot properly, leading to such symptoms as prolonged bleeding and easy bruising. Bleeding disorders are also referred to as coagulopathy, abnormal bleeding, and clotting disorders.
What is hemophilia B?
Hemophilia B (also known as factor IX deficiency or Christmas disease) is mainly an inherited bleeding disorder caused by a lack of a protein in the blood called factor IX. This protein is necessary for proper blood clotting.
What is the incidence of hemophilia B?
About 1 in 5,000 males in the United States are born with hemophilia. Hemophilia B is the second most common type of hemophilia, making up about 15% of cases. While it is very rare, females can be born with hemophilia if they have a male relative with the condition.
How do you get hemophilia B?
Most people with hemophilia B have a family history of hemophilia and are born with the condition. However, in about 30% of cases, there is no family history of the disorder and the condition happens as the result of a spontaneous gene mutation.
What causes hemophilia B?
Hemophilia B is caused by a shortage of a protein in your blood called factor IX, which is essential for normal blood clotting. When a blood vessel is injured, a clot is formed to seal cuts and breaks at the site of injury to stop the bleeding. A person with hemophilia B is unable to form blood cuts normally, leading to the prolonged bleeding and easy bruising seen in this disease.
Who is at risk for hemophilia B?
Hemophilia B is mainly inherited and usually only occurs in males, though in rare cases the disorder can occur in females. All races and economic groups are equally likely to be affected.
What are the symptoms of hemophilia B?
Common symptoms of hemophilia B include:
- Prolonged bleeding after an injury
- Easy bruising
- Bleeding in the mouth from a cut or bite or from losing a tooth
- Heavy nosebleeds for no obvious reason
- Heavy bleeding from a minor cut
- Cuts that bleed again after they have already stopped for a short time
How do I know if I have hemophilia B?
If you are experiencing symptoms such as prolonged bleeding or easy bruising, and you suspect that you have hemophilia, talk to your doctor. He or she will ask you about your family medical history and your own medical history and perform a physical examination. Your doctor will also run blood tests to determine the level of factor IX in your blood.
How is hemophilia B treated?
Hemophilia B is mainly treated by increasing the level of factor IX in the blood. This can be achieved with replacement therapy, which includes medicines that contain actual proteins to replace the ones that are missing.
Local clotting agents (antifibrinolytics) are another type of treatment for hemophilia B. They help protect clots and hold them in place and are often used in combination with other medicines.
What are the different levels of hemophilia B?
There are different levels of hemophilia B — mild, moderate, and severe. It is important to know the level because determining the proper treatment depends on the severity of the condition.
Why are males more likely to have hemophilia B than females?
The genes that determine how the body makes blood clotting factor IX are located on the X chromosomes. Females have two X chromosomes, while males have one X and one Y chromosome. Only the X chromosome carries the genes related to clotting factors.
A male who has the abnormal gene on his X chromosome will have hemophilia. A female must have the abnormal gene on both of her X chromosomes to have hemophilia, a very rare occurrence.
Can you get hemophilia B later in life?
Yes, in rare cases, hemophilia can be acquired rather than inherited. This usually happens in older adults and is typically caused by an autoimmune disorder, cancer or reaction to certain drugs.
Is hemophilia B contagious?
No, hemophilia B is not contagious.
What is the difference between hemophilia B and hemophilia A?
Hemophilia A is the result of a deficiency in clotting factor VIII, while hemophilia B is the result of a deficiency in clotting factor IX.
What are inhibitors?
In rare instances, people with hemophilia B can develop an inhibitor to standard factor treatment. Only about 3% to 5% of patients with severe hemophilia B develop an inhibitor, which is a much lower incidence than in severe hemophilia A.
The risk of inhibitor development is higher if someone in the patient's family also has an inhibitor and is more frequent among African Americans.
What is an HTC?
An HTC, or hemophilia treatment center, is a clinic where medical experts and other specialists work together to provide specialized care, education and support to people with bleeding disorders. The healthcare teams at HTCs include pediatricians, adult and pediatric hematologists (doctors who specialize in bleeding disorders), nurses, social workers, physical therapists and dentists.
There are more than 100 federally funded HTCs throughout the United States. Locate an HTC in your area
Are there support groups available for people with hemophilia B?
Yes, there are a number of support groups available for people with bleeding disorders and their loved ones. Some of the National Hemophilia Foundation’s Chapter Centers offer support groups. You may also find a support group at a hemophilia treatment center (HTC) near you.
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Last Updated:
7/13/2009 11:26 AM