Living with Kaposi sarcoma
A cancer of the cells lining blood or lymph vessels that often shows up as purple or dark patches on the skin.
Understanding Kaposi sarcoma
It usually appears as tumors on the skin or inside the mouth. Skin patches or bumps may be purplish, reddish blue, or dark brown or black, usually on the legs and face. These often cause no symptoms. When tumors are in the lungs, liver, or digestive tract, they can cause problems such as bleeding or trouble breathing. There are four types: classic, endemic, iatrogenic (linked to immune-suppressing drugs), and AIDS-associated. It is mostly seen in adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Purple, reddish-blue, or dark skin patches
- Skin bumps or nodules
- Swollen lymph nodes
- Lesions in the mouth
- Bleeding or trouble breathing if organs are involved
- Weakened immune function
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
The Skin Cancer Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Expert lists: The Skin Cancer 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 Skin Cancer Foundation 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
It is caused by infection with a virus called Kaposi sarcoma associated herpesvirus (KSHV), also called human herpesvirus 8 (HHV8).
Also known as: kaposi's sarcoma; kaposi's sarcoma (clinical); kaposi's sarcoma (disease); kaposi's sarcoma of conjunctiva; kaposi's sarcoma of cornea; kaposi's sarcoma of lung
Patient organizations
- The Skin Cancer FoundationKaposi sarcoma · United States
- American Cancer SocietyKaposi sarcoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Kaposi sarcoma.
Explore research for Kaposi sarcoma
Explore actively recruiting Kaposi sarcoma studies with HealthSpark.
Find actively recruiting studies for Kaposi sarcoma 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Kaposi sarcoma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Kaposi sarcoma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Kaposi sarcoma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.