Living with Factor XII deficiency disease
An inherited clotting protein shortage that slows clotting in a lab test but does not usually cause bleeding.
Understanding Factor XII deficiency disease
The lack of factor XII does not cause abnormal bleeding. Blood takes longer to clot in a test tube. It is usually discovered when other lab tests are run. It can be found at any time in life.
Signs & symptoms
GARD lists these findings:
- Longer clotting time on a lab test (prolonged PTT)
- Low factor XII activity in the blood
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 F12 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
Changes in the F12 gene cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: congenital factor xii deficiency; congenital hageman factor deficiency; deficiency, hageman; f12 deficiency; factor xii deficiency; haf deficiency
Patient organizations
- National Bleeding Disorders FoundationFactor XII deficiency disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Factor XII deficiency disease.
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