Living with Bathing suit ichthyosis
A rare genetic skin condition with large dark scales in certain areas of the body.
Understanding Bathing suit ichthyosis
It is a variant of autosomal recessive congenital ichthyosis, a group of conditions that cause scaly skin from birth. Signs show up in newborns and infants. Features can include red, scaly, thickened skin, and eyelids or lips that turn outward.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Scaling skin (ichthyosis)
- Thickened skin
- Red skin all over (erythroderma)
- Eyelids that turn outward (ectropion)
- Lips that turn outward (eclabion)
- Trouble sensing temperature
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.
- 3Consider genetic testing
Changes in TGM1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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
Changes in the TGM1 gene cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: bsi
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesBathing suit ichthyosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Bathing suit ichthyosis.
Explore research for Bathing suit ichthyosis
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- Recruiting studies from ClinicalTrials.gov
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