Living with Lamellar ichthyosis
An inherited skin condition in which babies are born in a tight, clear membrane and later have large, dark, plate-like scales.
Understanding Lamellar ichthyosis
Babies are typically born with a tight, clear sheath called a collodion membrane, which dries and peels in the first weeks. After that, they have scaly skin and eyelids and lips that turn outward. Large, dark, plate-like scales cover most of the body. Infants may develop infections, dehydration, and breathing problems. Hair loss, nail changes, less sweating, heat sensitivity, and thick palms and soles can also occur.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Large, plate-like scales
- Dry skin
- Eyelids turned outward (ectropion)
- Thin or missing hair and eyebrows
- Nail changes
- Itching
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 eye disease 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 may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- 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 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 (also called variants) cause this condition. It can be inherited in an autosomal dominant way (one changed copy is enough) or an autosomal recessive way (a changed copy from each parent).
Also known as: classic lamellar ichthyosis; collodion baby; congenital lamellar ichthyosis; li
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesLamellar ichthyosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Lamellar ichthyosis.
Explore research for Lamellar ichthyosis
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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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