Living with Ichthyosis linearis circumflexa
A rare genetic form of Netherton syndrome that affects the skin, hair, and immune system.
Understanding Ichthyosis linearis circumflexa
Newborns can have very red, scaly skin that may leak fluid. Some are born with a tight, clear layer called a collodion membrane that usually peels in the first few weeks. Health often improves as children grow, but many stay smaller than peers.
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Red, scaly skin or ring-shaped patches
- Itching that can lead to skin infections
- Fragile hair, eyelashes, and eyebrows
- Slow growth and weight gain
- Trouble keeping a normal body temperature
- Food allergies, hay fever, asthma, or eczema
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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 may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- 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
- 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 doesn't name a gene here. It says the condition is inherited in an autosomal recessive pattern, meaning a child inherits a changed copy of the gene from each parent.
Also known as: double-edged scaling; serpiginous scaling
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesIchthyosis linearis circumflexa · United States
You are more than your diagnosis
Perspectives from people navigating life with Ichthyosis linearis circumflexa.
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