Overview
Scott syndrome is an extremely rare inherited bleeding disorder that affects how your blood clots. In a healthy person, when you get a cut or injury, small blood cells called platelets become activated and expose a substance called phosphatidylserine on their surface. This substance is essential for triggering the clotting process. In Scott syndrome, platelets and certain other blood cells cannot properly move phosphatidylserine to their outer surface, which means the blood clotting process does not work as it should. This leads to a tendency to bleed more than normal, especially after injuries, surgeries, or dental procedures. Women with Scott syndrome may experience particularly heavy menstrual periods. The condition was first described in a patient named Ms. Scott in the 1970s, which is how it got its name. It is also sometimes called Scott platelet disorder. Symptoms can range from mild to moderate bleeding problems. Some people may not realize they have the condition until they face a situation that challenges their clotting system, such as surgery or trauma. Because it is so rare, Scott syndrome is often underdiagnosed or misdiagnosed as another bleeding disorder. There is currently no cure for Scott syndrome. Treatment focuses on managing and preventing bleeding episodes. Fresh frozen plasma, platelet transfusions, and medications that help stabilize clots may be used when needed. Careful planning before any surgical or dental procedure is essential to reduce the risk of excessive bleeding.
Key symptoms:
Excessive bleeding after surgery or dental proceduresHeavy menstrual periods in womenEasy bruisingProlonged bleeding from cuts or woundsNosebleeds that are hard to stopBleeding after childbirthBleeding into muscles or joints in severe casesDelayed wound healing
Clinical phenotype terms (7)— hover any for plain English
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Scott syndrome.
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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 Scott syndrome.
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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.What precautions should I take before any surgery or dental procedure?,Should I carry emergency medication with me, and if so, what kind?,Are there any activities or sports I should avoid?,How should heavy menstrual bleeding be managed in my case?,Should my family members be tested for Scott syndrome?,What should I do if I experience uncontrolled bleeding at home?,Are there any new treatments or clinical trials I should know about?
Common questions about Scott syndrome
What is Scott syndrome?
Scott syndrome is an extremely rare inherited bleeding disorder that affects how your blood clots. In a healthy person, when you get a cut or injury, small blood cells called platelets become activated and expose a substance called phosphatidylserine on their surface. This substance is essential for triggering the clotting process. In Scott syndrome, platelets and certain other blood cells cannot properly move phosphatidylserine to their outer surface, which means the blood clotting process does not work as it should. This leads to a tendency to bleed more than normal, especially after injurie
How is Scott syndrome inherited?
Scott syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Scott syndrome?
17 specialists and care centers treating Scott syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.