Living with SCOTT SYNDROME
An extremely rare inherited bleeding disorder caused by platelets that do not help blood clot well.
Understanding SCOTT SYNDROME
People can have bleeding episodes, such as nosebleeds, easy bruising, and long bleeding after surgery. Women may bleed heavily after delivery. It can be noticed at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bleeding after delivery (postpartum hemorrhage)
- Nosebleeds
- Easy bruising
- Long bleeding after surgery
- Heavy periods
- Bleeding gums
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 ANO6 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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 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
It is caused by changes in the ANO6 gene. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: bdplt7; bleeding abnormality due to deficiency of platelet biding of factor x; bleeding abnormality due to deficiency of platelet binding of factor x; bleeding disorder, platelet-type, 7; familial prothrombin consumption inhibitor; familial prothrombin conversion defect
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 SCOTT SYNDROME.
Explore research for SCOTT SYNDROME
Explore actively recruiting SCOTT SYNDROME studies with HealthSpark.
Find actively recruiting studies for SCOTT SYNDROME 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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