Living with Factor XIII deficiency
A rare bleeding disorder, usually starting in newborns, with long bleeding after injuries and bleeding into joints and muscles.
Understanding Factor XIII deficiency
In the inherited form, signs begin soon after birth, often with bleeding from the umbilical cord stump. Bleeding can occur after surgery or minor injury, or into joints and muscles, causing pain. Women may have heavy periods and repeated miscarriages. Bleeding inside the skull is a risk. The acquired form is milder and appears later in life.
Signs & symptoms
GARD describes these common symptoms in its summary:
- Bleeding from the umbilical cord stump
- Long bleeding after surgery or injury
- Bleeding into joints or muscles
- Nosebleeds and bleeding gums
- Easy bruising
- 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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 there is an inherited form and an acquired form. It does not name a specific gene.
Also known as: factor xiii deficiency disease; fibrin stabilizing factor deficiency; fxiiid
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 Factor XIII deficiency.
Explore research for Factor XIII deficiency
Explore actively recruiting Factor XIII deficiency studies with HealthSpark.
Find actively recruiting studies for Factor XIII deficiency with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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