Living with Epithelioid hemangioendothelioma
A rare blood vessel tumor that often shows up as a painful nodule in the soft tissue of an arm or leg.
Understanding Epithelioid hemangioendothelioma
It is usually a single lesion in the soft tissue of an arm or leg, often starting from a small vein. People often notice a painful nodule, which may come with swelling or vein inflammation. It can occur at a variety of ages.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- A painful nodule
- Swelling (edema)
- Vein inflammation (thrombophlebitis)
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 and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The EHE Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The EHE Foundation
- 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 The EHE Foundation
- 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
Changes in genes cause this condition. GARD does not name a specific gene.
Also known as: epithelioid angioendothelioma; epithelioid angiosarcoma; epithelioid hemangioendothelioma, malignant; malignant epithelioid hemangioendothelioma
Patient organizations
- The EHE FoundationEpithelioid hemangioendothelioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Epithelioid hemangioendothelioma.
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- Recruiting studies from ClinicalTrials.gov
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