Living with Familial generalized lentiginosis
A rare inherited skin condition with many flat brown spots over the body and no other health problems.
Understanding Familial generalized lentiginosis
The spots are brown to dark brown, flat, and about 0.2 to 1 cm wide. They can be found all over the body, sometimes on the palms or soles, but not inside the mouth. GARD says there are no other health problems. It can appear at any time in life.
Signs & symptoms
GARD describes this feature in its summary:
- Many flat brown spots (lentigines)
- Spots over the whole body
- Spots sometimes on the palms or 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.
- 3Consider genetic testing
Changes in SASH1 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 SASH1 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: familial lentigines profusa; familial multiple lentigines syndrome without systemic involvement; lentiginosis profusa; lentiginosis, diffuse; lentiginosis, generalized; lentiginosis, inherited patterned
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 Familial generalized lentiginosis.
Explore research for Familial generalized lentiginosis
Explore actively recruiting Familial generalized lentiginosis studies with HealthSpark.
Find actively recruiting studies for Familial generalized lentiginosis with HealthSpark. Share your city to explore research near you.
- 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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