Living with Kasabach-Merritt syndrome
A condition in which certain blood vessel tumors in babies trap platelets, causing very low platelet counts and bleeding.
Understanding Kasabach-Merritt syndrome
The tumors are kaposiform hemangioendotheliomas and tufted angiomas. The very low platelet count (thrombocytopenia) can cause severe bleeding and can progress to a clotting problem called disseminated coagulopathy. It is seen in newborns and infants.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low platelet count (thrombocytopenia)
- Tiny red spots (petechiae)
- Purple spots or patches (purpura)
- Red, strawberry-like birthmark (hemangioma)
- Tufted angioma
- Low fibrinogen (a clotting protein)
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.
- 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)
- 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 lists autosomal dominant inheritance, but does not describe a cause for this condition yet.
Also known as: hemangioma thrombocytopenia syndrome; hemangioma-hemorrhage syndrome; hemangioma-thrombocytopenia syndrome; hemangiomatosis with thrombocytopenia; kasabach merritt phenomenon; kasabach merritt syndrome
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 Kasabach-Merritt syndrome.
Explore research for Kasabach-Merritt syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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