Living with Leukonychia totalis
A nail condition in which the entire nail turns white, usually inherited and present from birth.
Understanding Leukonychia totalis
The inherited forms usually involve all 20 nails and are present from birth. It may also be acquired during life, which means it is not inherited. Some people also have eyelash, eye, or kidney stone problems.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Completely white nails
- Changes in fingernails and toenails
- Changes in eyelashes
- Sensitivity to light (photophobia)
- Inflamed eyelids (blepharitis)
- Kidney stones
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 PLCD1 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
The inherited forms can be caused by changes in the PLCD1 gene. It is usually autosomal dominant, and less often autosomal recessive, or it can be acquired.
Also known as: porcelain nails
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 Leukonychia totalis.
Explore research for Leukonychia totalis
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- Recruiting studies from ClinicalTrials.gov
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- 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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