Living with Hereditary factor XI deficiency disease
A bleeding disorder that can cause long bleeding after dental work, injury, or surgery, and heavy periods.
Understanding Hereditary factor XI deficiency disease
People may have trouble stopping bleeding after dental extractions, injury, or surgery. Women may have heavy periods or heavy bleeding after delivery. Bleeding patterns differ a lot between people, even in one family, and cannot be predicted by factor XI level. It is most common in people of Ashkenazi Jewish descent, but affects all heritages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Long bleeding after dental extractions
- Frequent nosebleeds
- Heavy periods
- General tendency to bleed
- Low factor XI level
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
Specialists who may be involved include blood and bone marrow specialists and genetic specialists.
- 3Consider genetic testing
Changes in F11 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Hemophilia Federation of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Hemophilia Federation of America
- 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 Hemophilia Federation of America and other patient organizations
- 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
It is caused by changes in the F11 gene. It is usually autosomal recessive, but follows an autosomal dominant pattern in some families.
Also known as: congenital factor xi deficiency; congenital factor xi deficiency disease; factor xi deficiency, autosomal dominant; factor xi deficiency, autosomal recessive; haemophilia c; hemophilia c
Patient organizations
- Hemophilia Federation of AmericaHereditary factor XI deficiency disease · United States
- National Bleeding Disorders FoundationHereditary factor XI deficiency disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary factor XI deficiency disease.
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