Overview
East Texas bleeding disorder, also known as factor V deficiency (East Texas type) or factor V East Texas, is a very rare inherited bleeding condition. It is caused by a specific change (mutation) in the F5 gene, which provides instructions for making coagulation factor V — a protein that helps your blood clot properly. Unlike classical factor V deficiency where factor V levels are low, in the East Texas type the factor V protein is present but does not work correctly. This leads to a unique pattern of abnormal blood clotting tests and a tendency to bleed more easily than normal. People with this disorder may experience prolonged bleeding after injuries, surgery, or dental procedures. They may also bruise easily or have nosebleeds and heavy menstrual periods. The severity of bleeding can vary from person to person. Some individuals may have relatively mild symptoms, while others may have more significant bleeding episodes that require medical attention. Treatment focuses on managing and preventing bleeding episodes. Fresh frozen plasma (FFP) is the main treatment used to replace the missing clotting function during active bleeding or before surgical procedures. There is no specific factor V concentrate widely available, so management relies on plasma-based products and careful planning around any procedures that might cause bleeding. Working closely with a hematologist experienced in rare bleeding disorders is essential for proper care.
Key symptoms:
Easy bruisingProlonged bleeding after cuts or injuriesExcessive bleeding after surgery or dental workNosebleedsHeavy menstrual periods in womenProlonged bleeding after childbirthBleeding from the gumsAbnormal blood clotting test results
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for East Texas bleeding disorder.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for East Texas bleeding disorder at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for East Texas bleeding disorder.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to East Texas bleeding disorder.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How severe is my (or my child's) bleeding tendency, and what does that mean for daily life?,What activities or sports should be avoided or modified?,What should I do if a bleeding episode occurs at home?,What medications should I avoid because they could worsen bleeding?,How should we prepare for any upcoming surgeries or dental procedures?,Should other family members be tested for this condition?,Are there any clinical trials or new treatments being studied for this disorder?
Common questions about East Texas bleeding disorder
What is East Texas bleeding disorder?
East Texas bleeding disorder, also known as factor V deficiency (East Texas type) or factor V East Texas, is a very rare inherited bleeding condition. It is caused by a specific change (mutation) in the F5 gene, which provides instructions for making coagulation factor V — a protein that helps your blood clot properly. Unlike classical factor V deficiency where factor V levels are low, in the East Texas type the factor V protein is present but does not work correctly. This leads to a unique pattern of abnormal blood clotting tests and a tendency to bleed more easily than normal. People with t
How is East Texas bleeding disorder inherited?
East Texas bleeding disorder follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.