Living with Congenital nonbullous ichthyosiform erythroderma
A genetic skin condition in which babies are born with a tight membrane, followed by red, scaly skin.
Understanding Congenital nonbullous ichthyosiform erythroderma
Many babies are born with a tight, clear sheath over the skin called a collodion membrane, which usually sheds in the first few weeks. After that the skin is red (erythroderma) and covered with fine white scales (ichthyosis). Infants can develop infections, dehydration, and breathing problems early in life. Some people have thickened palms and soles, little or no sweating, nail changes, or hair loss. Some skin problems may improve by adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red skin (erythroderma)
- Fine white scales (ichthyosis)
- Thick palms and soles
- Less sweating (hypohidrosis)
- Itching
- Eyelids turned outward (ectropion)
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 cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: alligator skin; cie; collodion baby; congenital ichthyosiform erythroderma; congenital ichthyosiform erythroderma (disease); congenital lamellar ichthyosis
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesCongenital nonbullous ichthyosiform erythroderma · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital nonbullous ichthyosiform erythroderma.
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