Living with Becker nevus syndrome
A rare condition with a Becker nevus skin patch plus breast, muscle, or bone differences on the same side.
Understanding Becker nevus syndrome
These can include underdeveloped breast tissue and skin, muscle, or bone differences. Bone features may include a smaller shoulder area, curved spine (scoliosis), fused ribs, and a shorter arm. It can show up at any time in life. It is thought to occur by chance, with no family history.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Darker skin patches (hyperpigmented spots)
- Underdeveloped breast (hypoplasia)
- Extra nipple
- Muscle wasting around the shoulder
- Chest that sinks in or sticks out
- Smaller or shorter limbs
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, maternal-fetal medicine specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in ACTB 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); Maternal-fetal medicine specialists (pregnancy-related); Skin, hair, and nail specialists (dermatologists)
- 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 Nevus Outreach, Inc. 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 lists the ACTB gene for this condition. It is thought to occur by chance, with no history in the family.
Also known as: bns; pigmentary hairy epidermal nevus
Patient organizations
- Nevus Outreach, Inc.Becker nevus syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Becker nevus syndrome.
Explore research for Becker nevus syndrome
Explore actively recruiting Becker nevus syndrome studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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