Living with Familial dysfibrinogenemia
A clotting condition in which an abnormal fibrinogen protein can cause bleeding, clotting, or no symptoms.
Understanding Familial dysfibrinogenemia
The abnormal fibrinogen causes faulty clots and can raise or lower the ability to clot. Of people with the inherited form, about 40% have no symptoms, about 50% have a bleeding problem, and about 10% have excess clotting or both. It can appear at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Easy bleeding
- Nosebleeds
- Bleeding gums
- Bleeding in the digestive tract
- Blood clots in veins
- Sometimes no symptoms
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
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 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
Changes in the FGA, FGB, or FGG genes cause the inherited form. It is most often autosomal dominant or codominant, but can be autosomal recessive.
Also known as: congenital dysfibrinogenemia; dysfibrinogenemia; dysfibrinogenemia, congenital; hereditary dysfibrinogenemia; hypodysfibrinogenemia
Patient organizations
- National Bleeding Disorders FoundationFamilial dysfibrinogenemia · United States
- National Blood Clot AllianceFamilial dysfibrinogenemia · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial dysfibrinogenemia.
Explore research for Familial dysfibrinogenemia
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