Living with Carney complex
A condition that causes changes in skin color and a higher chance of tumors, often starting in the teen years.
Understanding Carney complex
Many signs show up in the teen years or early adulthood. Almost everyone has areas of unusual skin color, like brown or black spots (lentigines) around the lips, eyes, or genitals. Some have a blue-black mole called a blue nevus. GARD says the first signs may appear in the newborn and infant years.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blue-black moles (blue nevus)
- Tumors in the heart (cardiac myxoma)
- Tumors in the skin (cutaneous myxoma)
- Thyroid nodules (goiter)
- Too much growth hormone
- High cortisol levels
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, genetic specialists, heart and blood vessel specialists and hormone specialists.
- 3Consider genetic testing
Changes in PRKAR1A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists); Hormone specialists (endocrinologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 American Cancer Society 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
Changes in the PRKAR1A gene cause Carney complex. It is inherited in an autosomal dominant way, so one changed copy of the gene can cause it.
Also known as: atrial myxoma with lentigines; carney syndrome; carney's syndrome; cnc; lamb; lamb (lentigines, atrial myxoma, blue nevi) syndrome
Patient organizations
- American Cancer SocietyCarney complex · United States
- Cancer Hope NetworkCarney complex · United States
- CancerCareCarney complex · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Carney complex.
Explore research for Carney complex
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