Living with Autosomal recessive congenital ichthyosis 5
An inherited skin condition that causes scaling over the whole body, with possible hair loss and trouble sweating.
Understanding Autosomal recessive congenital ichthyosis 5
There are two main types. Lamellar ichthyosis causes dark scales without redness. The other type causes fine white scales on red skin. Both can weaken the skin's barrier and cause painful cracks on the hands and feet. Hair loss and trouble sweating can also happen.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Scaly, red skin from birth
- White scaling skin
- More lines on the palms (palmar hyperlinearity)
- Painful cracks on hands and feet (from summary)
- Hair loss (from summary)
- Trouble sweating (from summary)
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
It is caused by changes in genes that affect how the skin develops. It is autosomal recessive, so a child inherits a changed copy of a gene from each parent.
Also known as: arci5; autosomal recessive congenital ichthyosis type 5; autosomal recessive congenital nonlamellar and nonerythrodermic ichthyosis; ichthyosis congenita iii; ichthyosis, congenital, autosomal recessive type 5; ichthyosis, nonlamellar and nonerythrodermic, congenital, autosomal recessive
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesAutosomal recessive congenital ichthyosis 5 · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal recessive congenital ichthyosis 5.
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