Living with Capillary malformation-arteriovenous malformation syndrome
A blood vessel condition that causes small pink or red spots on the skin, starting in infancy.
Understanding Capillary malformation-arteriovenous malformation syndrome
CM-AVM causes capillary malformations: enlarged tiny blood vessels that increase blood flow near the skin. They look like multiple small, round, pink or red spots. It usually begins in the newborn and infant years.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Capillary malformations (small pink or red skin spots)
- Abnormal blood vessels in the skin
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 genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
RASopathies Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists)
- Expert care
- Expert lists: RASopathies Network
- 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 RASopathies Network 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 changes in genes cause CM-AVM. It is inherited in an autosomal dominant way, so one changed copy of a gene can cause it.
Also known as: capillary malformation-arteriovenous malformation; cm-avm
Patient organizations
- RASopathies NetworkCapillary malformation-arteriovenous malformation syndrome · United States
- Klippel-Trenaunay Support GroupCapillary malformation-arteriovenous malformation syndrome · United States
- The Aneurysm and AVM FoundationCapillary malformation-arteriovenous malformation syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Capillary malformation-arteriovenous malformation syndrome.
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