Living with Kaposiform hemangioendothelioma
A rare blood vessel tumor, often in children, that can cause very low platelets and bleeding problems.
Understanding Kaposiform hemangioendothelioma
In children, it may be linked to a severe drop in platelets and clotting problems called Kasabach-Merritt syndrome. It can show up at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red bumps or raised patches on the skin
- Low platelet count (thrombocytopenia)
- Tiny red spots or purple patches on the skin
- Swelling (edema, lymphedema)
- Pain
- Clotting problems
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 cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Sarcoma Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Expert lists: Sarcoma Alliance
- 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 Sarcoma Alliance and other patient organizations
- 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 doesn't describe a cause for this condition yet.
Patient organizations
- Sarcoma AllianceKaposiform hemangioendothelioma · United States
- American Cancer SocietyKaposiform hemangioendothelioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Kaposiform hemangioendothelioma.
Explore research for Kaposiform hemangioendothelioma
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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