Factor XI deficiency is a rare bleeding disorder. The Roman numerals XI mean “eleven”. Factor XI deficiency can cause your blood to clot if it lacks certain clotting factors.
Factor XI deficiency is a mild form of the disease. If you have factor XI deficiency, you might experience heavy menstrual periods or bleeding after surgeries.
Treatments are available to help prevent future health problems.
Factor XI deficiency is a rare bleeding disorder. People with Factor XI deficiency don’t have enough of a protein in the blood called factor XI.
Factor XI is a factor that can cause bleeding. Factor XI is a factor that helps with the clotting process. Blood is solidified in order to stop bleeding during clotting.
“If you have a shortage of factor XI in the blood, you might experience excessive bleeding when you are injured or undergoing a surgical procedure. You won’t bleed as fast as people without factor XI deficiency, but it may be harder to stop blood flow from a deep wound or surgery.”
Factor XI deficiency is rare. It’s estimated to occur in just
Factor XI deficiency could also be called other names.
- Factor 11 deficiency
- A genetic disorder called Hemophilia C.
- haemophilia C is a blood disease.
- The deficiency of the PTA is called a deficiency.
- A deficiency of the blood thinner, plasma thromboplastin.
- Rosenthal syndrome is a genetic condition.
“Factor XI deficiency has mild symptoms compared to other types of bleeding disorders. There is a good chance you won’t experience any symptoms.”
If you experience symptoms, they may include:
- trouble stopping bleeding after surgery, dental extractions, or an accident or injury
- spontaneous nosebleeds
- bruising more easily
- heavy or long-lasting periods (menstruation)
- bleeding after having a baby (postpartum hemorrhage)
The risk of bleeding varies from person to person.
Factor XI deficiency is caused by an abnormal change in the genes that regulate the formation of clotting factors in the blood. Clotting factors help form clot and close bleeding wounds.
The instructions to make factor XI will not be given properly if you have a genetic abnormality. This abnormal gene may not make enough factor XI. Factor XI is in short supply.
Factor XI deficiency is an inheritable condition. The parents and children are responsible for the condition.
The mutation responsible for factor XI is autosomal recessive. It’s not linked to the sex chromosomes. To get factor XI deficiency from your parents, both parents need to have at least one copy of the factor XI mutation.
“If you have one copy of the factor XI deficiency, you are considered a carrier. Carriers with slightly lower factor XI levels don’t usually have noticeable symptoms. If your partner also carries the condition, you can only pass it on to your children.”
In rare cases, you can develop factor XI deficiency later in life. For example, it can be caused by severe liver disease since factor XI is produced in the liver, or it may be caused if you receive a liver transplant from someone affected by factor XI deficiency. This is called acquired factor XI deficiency.
If you have a family history of bleeding disorders, your doctor will ask you about your symptoms and any medications you are taking.
Factor XI deficiency can be diagnosed with blood tests. To perform these tests, a phlebotomist or nurse will take a small sample of blood by inserting a needle into a vein on the inside of your elbow. Tests may include:
- Bleeding time test: A bleeding time test measures how long it takes for your blood to form clots to stop bleeding.
- Platelet function tests: These are a group of tests that evaluate the function of your platelets. Platelets are pieces of cells from the bone marrow that are important in forming blood clots.
- Prothrombin time test (PT) and activated partial thromboplastin time (aPTT) test: Prothrombin time (PT) and activated partial thromboplastin time (aPTT) tests measure the amount of time it takes for your blood plasma to clot.
- FXI assay to confirm the diagnosis: This test can find out if your body produces enough of this specific clotting factor.
Most people with factor XI deficiency don’t require treatment. If you are injured or in an accident, you might need to receive fresh frozen plasma (FFP) dripped into a vein (intravenously) to replace some of the lost clotting factors.
If you are having a baby, your doctor may recommend that you take factor XI deficiency medication to prevent bleeding.
For minor surgeries, your doctor may prescribe tranexamic acid or aminocaproic acid tablets to take beforehand and for a few days afterward. These medications work by slowing down the breakdown of clotting factors in the blood. For major surgeries, you may need to receive FFP.
If you’re experiencing very heavy periods caused by factor XI deficiency, a doctor may suggest that you take tranexamic acid tablets during your periods. Oral contraceptive pills (birth control pills) can also help make your periods lighter.
You should avoid taking nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or aspirin, before or after surgery. These medications may increase your risk of bleeding.
Factor XI deficiency is the same for both genders at birth.
If you have factor XI deficiency, you are at a higher risk.
Factor XI deficiency is manageable when compared to other bleeding disorders. Most people can live a normal life.
“People with factor XI deficiency don’t bleed spontaneously like other people with bleeding disorders. Bleeding is seen after surgery or trauma. People with factor XI deficiency can have surgeries if they have treatment or preventive therapy.”
Here are answers to questions about factor XI deficiency.
What’s the difference between factor XI, factor VIII, and factor IX deficiency?
There are many types of clotting factors in the body. The main difference between factor VIII deficiency (hemophilia A), factor IX deficiency (hemophilia B), and factor XI deficiency is the type of clotting factor that your body lacks.
The risk of bleeding is higher for factor XI deficiency than for factor VIII deficiency, and the symptoms of factor XI deficiency are more serious.
How many people have factor XI deficiency in the United States?
Factor XI deficiency is rare and some people can have the condition without knowing they have it. The National Institutes of Health (NIH) estimates that between 300 and 3,000 people are currently living in the United States with this factor XI deficiency.
Should I tell my dentist if I have factor XI deficiency?
You should tell your dentist or oral surgeon if you know you have factor XI deficiency, You may need to take medications or take precautions before any dental procedures, especially surgeries, to minimize the risk of bleeding.
“Some people don’t know they have factor XI deficiency until after they have experienced higher than normal bleeding after a dental procedure. If you bleed a lot during dental work, you should talk to your doctor about getting tested for factor deficiency.”
If I have factor XI deficiency but my partner does not, will my kids have it too?
Factor XI deficiency is a condition that can be passed on. Both parents need to have a copy of the abnormal gene in order to pass it on to their children. If your partner does not have any copies of the abnormal gene, your children will not have factor XI deficiency, but you will be carriers of the disorder.
If your partner is a carrier of the abnormal gene, your kids have a 50% chance of having factor XI deficiency and a 50% chance of being a carrier of the disorder.
Does factor XI deficiency ever go away?
Factor XI deficiency is a lifelong condition with no cure, and can be treated with blood and medication. Factor XI deficiency is an inherited condition.
Factor IX deficiency can make it difficult for your body to clot after an injury or surgery. Mild symptoms are usually present.
If you have factor IX deficiency, it is important to talk with your doctor about the need for medication or a blood clot-inducing drug before an operation, during menstruation, or during childbirth.
If you plan to have children, pre-conception and prenatal counseling can also help you understand the chances of passing this disorder to your kids.