Overview
Kaposi sarcoma (KS) is a type of cancer that causes abnormal growths in the skin, lymph nodes, and internal organs. It develops from the cells that line blood vessels and lymph vessels. The disease is closely linked to infection with a virus called Human Herpesvirus 8 (HHV-8), also known as Kaposi sarcoma-associated herpesvirus (KSHV). KS appears in several forms depending on who it affects: classic KS (mainly in older men of Mediterranean or Eastern European descent), endemic KS (in sub-Saharan Africa), epidemic or AIDS-related KS (in people with HIV/AIDS), and iatrogenic KS (in people taking immune-suppressing medications after organ transplants). The most visible sign of Kaposi sarcoma is skin lesions — flat or raised patches that are often red, purple, brown, or pink. These can appear anywhere on the body, including the face, legs, and mouth. The disease can also affect the lungs, digestive tract, and lymph nodes, causing more serious symptoms like breathing problems, swallowing difficulties, or swelling in the legs. Treatment depends on the type of KS and how widespread it is. For HIV-related KS, starting antiretroviral therapy (ART) to control HIV is often the first and most important step. Other treatments include chemotherapy, radiation therapy, immunotherapy, and targeted therapies. While KS can be managed effectively in many people, it remains a serious condition that requires ongoing medical care.
Key symptoms:
Red, purple, brown, or pink skin patches or bumps (lesions)Swelling in the legs, feet, or face (lymphedema)Painful or uncomfortable skin growthsLesions inside the mouth or throatShortness of breath or coughing (if lungs are affected)Nausea, vomiting, or stomach pain (if digestive tract is affected)Blood in stool or vomitDifficulty swallowingSwollen lymph nodesFatigue and general weaknessWeight lossFever (often related to underlying HIV or infection)
Clinical phenotype terms (26)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsAIDS Malignancy Consortium — PHASE2
Washington University School of Medicine — NA
Washington University School of Medicine — PHASE2
Washington University School of Medicine
Imperial College London — PHASE1
National Cancer Institute (NCI) — PHASE2
National Cancer Institute (NCI) — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availablePOMALYST�
POMALYST (pomalidomide) is indicated for the treatment of adult patients with AIDS-related Kaposi sarcoma (KS) after failure of highly active antiretroviral therapy (HAART); and for the treatment of K…
POMALYST (pomalidomide) is indicated for the treatment of adult patients with AIDS-related Kaposi sarcoma (KS) after failure of highly active antiretroviral therapy (HAART); and for the treatment of Kaposi sarcoma (KS) in adult patients who are HIV-negative.
Rare Disease Specialist
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Kaposi sarcoma.
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1 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What type of Kaposi sarcoma do I have, and how does that affect my treatment options?,Should I be tested for HIV and HHV-8 if I haven't been already?,Do I need treatment right away, or is watchful waiting appropriate for my situation?,What are the side effects of the recommended treatment, and how can they be managed?,If I have HIV, how will starting or adjusting antiretroviral therapy affect my KS?,How will we know if the treatment is working, and how often will I need follow-up tests?,Are there clinical trials available that I might be eligible for?
Common questions about Kaposi sarcoma
What is Kaposi sarcoma?
Kaposi sarcoma (KS) is a type of cancer that causes abnormal growths in the skin, lymph nodes, and internal organs. It develops from the cells that line blood vessels and lymph vessels. The disease is closely linked to infection with a virus called Human Herpesvirus 8 (HHV-8), also known as Kaposi sarcoma-associated herpesvirus (KSHV). KS appears in several forms depending on who it affects: classic KS (mainly in older men of Mediterranean or Eastern European descent), endemic KS (in sub-Saharan Africa), epidemic or AIDS-related KS (in people with HIV/AIDS), and iatrogenic KS (in people taking
How is Kaposi sarcoma inherited?
Kaposi sarcoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Kaposi sarcoma?
Yes — 12 recruiting clinical trials are currently listed for Kaposi sarcoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Kaposi sarcoma?
25 specialists and care centers treating Kaposi sarcoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Kaposi sarcoma?
1 patient support program are currently tracked on UniteRare for Kaposi sarcoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.