Living with Autosomal dominant lamellar ichthyosis
A rare inherited skin condition with large, dark scales and thick palms and soles, usually starting at birth.
Understanding Autosomal dominant lamellar ichthyosis
It usually begins at birth or in the early newborn period. Scaling is often more noticeable on the arms and legs. The palms and soles are thickened (palmoplantar keratoderma). Some people have mild skin redness and moderate itching. In badly affected areas, people may not sweat, which can affect how the body handles heat.
Signs & symptoms
GARD doesn't list a symptom list for this condition, but its summary describes these features:
- Large, dark scales over most of the body
- Thickened palms and soles
- Mild skin redness
- Moderate itching
- Less sweating in badly affected areas
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 says this condition is inherited in an autosomal dominant way, meaning one changed copy of the gene can be enough to cause it. It doesn't list a specific gene here.
Also known as: ichthyosis, lamellar, autosomal dominant
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesAutosomal dominant lamellar ichthyosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal dominant lamellar ichthyosis.
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