Living with Hereditary factor I deficiency disease
An inherited blood clotting condition caused by too little or poorly working fibrinogen, with mild to severe bleeding.
Understanding Hereditary factor I deficiency disease
It is caused by too little fibrinogen, a blood protein, or fibrinogen that does not work well. Bleeding ranges from mild to severe. Types include afibrinogenemia (none), hypofibrinogenemia (low), dysfibrinogenemia (not working properly), and hypodysfibrinogenemia (low and not working properly). It can show up at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Easy bruising
- Bleeding gums
- Bleeding from the umbilical stump
- Bleeding under the skin
- Internal bleeding
- Belly pain
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 rare disease patient organizations for support
- 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
GARD says changes in genes (also called variants) cause this condition. It can be autosomal dominant or autosomal recessive.
Also known as: congenital fibrinogen deficiency; fga-related congenital afibrinogenemia; fgb-related congenital afibrinogenemia; fgg-related congenital afibrinogenemia; hereditary hypofibrinogenemia
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary factor I deficiency disease.
Explore research for Hereditary factor I deficiency disease
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