Living with Lelis syndrome
A rare inherited condition affecting skin, hair, sweating, and teeth.
Understanding Lelis syndrome
People with Lelis syndrome can have sparse hair and a reduced ability to sweat. Some also have missing teeth, nail changes, and thickened skin on the palms and soles. It may begin anywhere from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Darkened, thickened skin (acanthosis nigricans)
- Decreased ability to sweat (hypohidrosis)
- Sparse hair
- Darker skin around the mouth
- Fewer teeth than usual (hypodontia)
- Thick skin on palms and soles
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.
- 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
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- 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 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
A child inherits a changed copy of the gene from each parent (autosomal recessive). GARD does not list the specific gene.
Also known as: ectodermal dysplasia with acanthosis nigricans syndrome; ectodermal dysplasia-acanthosis nigricans syndrome; ectodermal dysplasia, hypohidrotic, with acanthosis nigricans
Patient organizations
- National Foundation for Ectodermal DysplasiasLelis syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Lelis syndrome.
Explore research for Lelis syndrome
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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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