Living with Piebaldism
An inherited condition with patches of skin and hair that are lighter than normal, usually present from birth.
Understanding Piebaldism
This leaves patches of skin and hair lighter than normal. About 90 percent of people have a white forelock near the front hairline. Eyelashes, eyebrows, and the skin under the forelock may be unpigmented. The patches are usually present at birth and don't grow or increase in number. GARD says it otherwise has no effect on health, but the pale patches are at higher risk of sunburn and sun-related skin cancer.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- White forelock (a white lock of hair at the front)
- Patches of lighter skin
- White eyebrows
- White eyelashes
- Spots of darker skin within pale patches
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 genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in KIT are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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 KIT gene cause this condition. It is autosomal dominant, which means one changed copy of the gene is enough to cause it.
Also known as: partial albinism; piebald skin depigmentation; piebald trait
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Piebaldism.
Explore research for Piebaldism
Explore actively recruiting Piebaldism studies with HealthSpark.
Find actively recruiting studies for Piebaldism 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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