Living with Hereditary factor XIII deficiency disease
An extremely rare inherited bleeding disorder in which blood clots are not stabilized well.
Understanding Hereditary factor XIII deficiency disease
Factor XIII helps stabilize a blood clot. Without enough, wounds heal poorly and blood can seep into soft tissues, causing pain and swelling. Internal bleeding can occur, and about 25 percent of affected people have bleeding in the brain. Acquired forms have been reported with liver failure, inflammatory bowel disease, and myeloid leukemia.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bleeding from the umbilical stump
- Easy bruising
- Bleeding under the skin
- Bleeding into joints
- Bleeding in the mouth
- Bleeding in the brain
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
It is usually caused by changes in the F13A1 gene, and sometimes the F13B gene. It is usually autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: congenital factor xiii deficiency; deficiency, laki-lorand factor; fibrin-stabilizing factor deficiency; laki-lorand factor deficiency disease
Patient organizations
- National Bleeding Disorders FoundationHereditary factor XIII deficiency disease · United States
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