Living with Familial hypofibrinogenemia
An inherited bleeding condition with mild bleeding after injury or surgery because of low fibrinogen in the blood.
Understanding Familial hypofibrinogenemia
People with this condition tend to have mild bleeding after an injury or surgery. It can show up at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bleeding gums
- A tendency to bleed more than usual
- Nosebleeds (epistaxis)
- Bleeding in the stomach or intestines
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
- 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 this condition. It is autosomal dominant, which means one changed copy of the gene is enough.
Patient organizations
- National Bleeding Disorders FoundationFamilial hypofibrinogenemia · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial hypofibrinogenemia.
Explore research for Familial hypofibrinogenemia
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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