Living with CLOVES syndrome
A rare condition with overgrowth of fatty tissue, blood and lymph vessel malformations, skin and spine differences, present from birth.
Understanding CLOVES syndrome
Other signs can include uneven fat distribution, overgrowth of the arms and legs, skin differences, and kidney problems such as a small or missing kidney. Severity varies a lot. GARD lists onset in the newborn period and infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overgrowth of fatty tissue
- Blood or lymph vessel malformations
- Skin birthmarks (epidermal nevus)
- Uneven overgrowth of one side or limb
- Facial asymmetry
- Broad palms and bulbous toe tips
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 bone and joint specialists, cancer specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in PIK3CA are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Alliance to Cure Cavernous Malformation and CLOVES Syndrome Community may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Alliance to Cure Cavernous Malformation, CLOVES Syndrome Community
- 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 Alliance to Cure Cavernous Malformation 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 says it is caused by somatic (acquired) changes in the PIK3CA gene. These changes do not affect egg or sperm cells, so the condition is not passed from parent to child.
Also known as: clove syndrome; clove syndrome, somatic; cloves; congenital lipomatous overgrowth-vascular malformation-epidermal nevi-skeletal anomaly syndrome; congenital lipomatous overgrowth-vascular malformation-epidermal nevi-spinal anomaly syndrome; congenital lipomatous overgrowth, vascular malformation, epidermal nevi, skeletal anomaly syndrome
Patient organizations
- Alliance to Cure Cavernous MalformationCLOVES syndrome · United States
- CLOVES Syndrome CommunityCLOVES syndrome · United States
- Klippel-Trenaunay Support GroupCLOVES syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with CLOVES syndrome.
Explore research for CLOVES syndrome
Explore actively recruiting CLOVES syndrome studies with HealthSpark.
Find actively recruiting studies for CLOVES syndrome 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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