Living with Factor XI deficiency
A bleeding disorder, usually mild, with long bleeding after surgery or injury.
Understanding Factor XI deficiency
It is called partial or severe depending on the protein level. Most people have mild bleeding problems, and some have few symptoms. The most common feature is long bleeding after injury or surgery, especially in the mouth, nose, or urinary tract. Bleeding into muscles or joints generally does not occur.
Signs & symptoms
GARD describes these common symptoms in its summary:
- Bleeding for a long time after surgery or injury
- Frequent nosebleeds
- Easy bruising
- Bleeding gums
- Blood-filled swellings (hematomas) after surgery
- Heavy or long periods (menorrhagia)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in genes cause low levels of the factor XI protein. GARD does not name the gene or how it is inherited.
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Factor XI deficiency.
Explore research for Factor XI deficiency
Explore actively recruiting Factor XI deficiency studies with HealthSpark.
Find actively recruiting studies for Factor XI deficiency with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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