Living with Ito hypomelanosis
A skin condition with streaked or swirled patches of lighter skin, sometimes with seizures, learning problems, or eye and spine differences.
Understanding Ito hypomelanosis
Other symptoms may include different degrees of learning disability, seizures, extra body hair, scoliosis, and strabismus. Girls are affected more often than boys. Diagnosis is based on symptoms, an exam, and a skin biopsy.
Signs & symptoms
Symptoms vary from person to person. GARD says these may occur:
- Streaked or swirled patches of light skin
- Learning disability
- Seizures
- Extra body hair
- Curved spine (scoliosis)
- Eyes that do not line up (strabismus)
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
National Foundation for Ectodermal Dysplasias 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: National Foundation for Ectodermal Dysplasias
- 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 National Foundation for Ectodermal Dysplasias
- 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
The exact cause is not known. Many people have some cells with normal chromosomes and some with changed ones, called chromosomal mosaicism. GARD says it is not inherited in families.
Also known as: hi syndrome; hmi; hmi - hypomelanosis of ito; hypomelanosis of ito; incontinentia pigmenti achromians; incontinentia pigmenti achromians syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasIto hypomelanosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Ito hypomelanosis.
Explore research for Ito hypomelanosis
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Find actively recruiting studies for Ito hypomelanosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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