Living with Congenital factor V deficiency
An inherited bleeding disorder in which low factor V, a clotting protein, can cause nosebleeds, bruising and bleeding after surgery.
Understanding Congenital factor V deficiency
It leads to low levels of coagulation factor V. The reduced amount can lead to nosebleeds, easy bruising and heavy bleeding after surgery or injury. It should not be confused with factor V Leiden, a risk factor for blood clots. It can show up at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Nosebleeds
- Easy bruising
- Bleeding into joints
- Heavy bleeding after surgery or injury
- Heavy periods
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 F5 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- 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 National Bleeding Disorders Foundation
- 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 F5 gene. It is autosomal recessive, so a child inherits a changed copy from each parent.
Also known as: ac globulin deficiency; deficiency, labile; hereditary factor v deficiency; hereditary factor v deficiency disease; hereditary hypoproaccelerinaemia; hereditary hypoproaccelerinemia
Patient organizations
- National Bleeding Disorders FoundationCongenital factor V deficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital factor V deficiency.
Explore research for Congenital factor V deficiency
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