Living with Linear nevus sebaceous syndrome
A condition with a large linear birthmark plus differences that can affect the brain, eyes, bones, and other organs.
Understanding Linear nevus sebaceous syndrome
The nevus is usually on the face, scalp, or neck. Common brain differences are intellectual disability, seizures, and enlargement of one side of the brain. Other features may include eye, bone, heart, and urogenital differences, and a higher cancer risk with age. It appears from birth to childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Large linear birthmark (sebaceous nevus)
- Seizures
- Intellectual disability
- Eye differences
- Small eyeball (microphthalmia)
- Brain differences, such as a small cerebellum
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 and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types and The Skin Cancer Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types, The Skin Cancer Foundation
- 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 Foundation for Ichthyosis and Related Skin Types 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
It is not inherited. It can be caused by a change in any of several genes that happens after fertilization and is present only in some body cells (mosaic).
Also known as: jadassohn nevus phakomatosis; linear nevus sebaceous; linear nevus sebaceus syndrome; linear sebaceous nevus; linear sebaceous nevus sequence; nevus sebaceous of jadassohn
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesLinear nevus sebaceous syndrome · United States
- The Skin Cancer FoundationLinear nevus sebaceous syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Linear nevus sebaceous syndrome.
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