Living with Hereditary factor IX deficiency disease
Another name for hemophilia B, an inherited bleeding disorder that slows blood clotting.
Understanding Hereditary factor IX deficiency disease
People may bleed or ooze for a long time after an injury or surgery. In severe cases, heavy bleeding can follow a minor injury or no injury. Bleeding into joints, muscles, the brain, or organs can cause serious complications. Milder forms may not show until surgery or a serious injury. In hemophilia B Leyden, bleeding in childhood is excessive but eases after puberty.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bleeding into joints
- Bleeding into muscles (hematomas)
- Long bleeding after dental work or surgery
- Frequent nosebleeds
- Blood in the urine
- Slow wound healing
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 F9 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Hemophilia Federation of America may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Hemophilia Federation of America
- 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 Hemophilia Federation of America 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
It is caused by changes in the F9 gene. It is X-linked recessive, meaning the gene is on the X chromosome.
Also known as: christmas disease; congenital f9 deficiency; congenital factor ix deficiency; congenital factor ix disorder; deficiency, functional factor ix; f9 deficiency
Patient organizations
- Hemophilia Federation of AmericaHereditary factor IX deficiency disease · United States
- National Bleeding Disorders FoundationHereditary factor IX deficiency disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary factor IX deficiency disease.
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