Overview
Inherited non-syndromic ichthyosis is a group of genetic skin disorders where the skin becomes abnormally dry, thick, and scaly. The word 'ichthyosis' comes from the Greek word for fish, because the skin can look like fish scales. In non-syndromic forms, the skin is the main organ affected — unlike syndromic ichthyosis, there are no major problems in other body systems like the brain or eyes. This group includes several subtypes such as ichthyosis vulgaris, lamellar ichthyosis, congenital ichthyosiform erythroderma (CIE), and autosomal recessive congenital ichthyosis (ARCI), among others. The severity varies widely. Some people have mild dryness and fine scaling, while others are born with a tight, shiny membrane called a collodion membrane that sheds in the first weeks of life, revealing red, scaly skin underneath. The scaling can affect the entire body or be concentrated on certain areas like the legs, arms, or trunk. Skin tightness can limit movement, and cracking can cause pain and increase the risk of infection. There is currently no cure for inherited non-syndromic ichthyosis. Treatment focuses on managing symptoms, primarily through regular use of moisturizers, keratolytic creams (which help soften and remove scales), and in more severe cases, oral retinoids such as acitretin. Bathing routines and humidity control also play important roles. With consistent skin care, many people with milder forms lead full, active lives, though those with severe subtypes may face significant daily challenges.
Key symptoms:
Dry, scaly skin over large areas of the bodyThickened skin, especially on the palms and solesSkin tightness that can limit movementRedness of the skin (erythroderma) in some formsCracking and fissuring of the skinCollodion membrane at birth in severe formsDifficulty sweating, leading to overheatingItchingSkin infections from cracks in the skinEctropion (eyelids turning outward) in severe casesEclabium (lips turning outward) in severe casesHair loss or thin hair in some formsThickened nailsReduced range of motion in fingers or joints
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Inherited non-syndromic ichthyosis.
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Specialists
View all specialists →No specialists are currently listed for Inherited non-syndromic ichthyosis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Inherited non-syndromic ichthyosis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What specific subtype of ichthyosis does my child (or do I) have, and what gene is involved?,What is the best daily skin care routine for this specific type?,Would oral retinoids be helpful, and what are the risks and side effects?,Are there any clinical trials or new treatments being studied that I should know about?,How can we prevent skin infections, and what signs should prompt a doctor visit?,What precautions should we take regarding heat and exercise?,Should other family members be tested, and what are the chances of passing this to future children?
Common questions about Inherited non-syndromic ichthyosis
What is Inherited non-syndromic ichthyosis?
Inherited non-syndromic ichthyosis is a group of genetic skin disorders where the skin becomes abnormally dry, thick, and scaly. The word 'ichthyosis' comes from the Greek word for fish, because the skin can look like fish scales. In non-syndromic forms, the skin is the main organ affected — unlike syndromic ichthyosis, there are no major problems in other body systems like the brain or eyes. This group includes several subtypes such as ichthyosis vulgaris, lamellar ichthyosis, congenital ichthyosiform erythroderma (CIE), and autosomal recessive congenital ichthyosis (ARCI), among others. The
At what age does Inherited non-syndromic ichthyosis typically begin?
Typical onset of Inherited non-syndromic ichthyosis is neonatal. Age of onset can vary across affected individuals.