Living with Roch-Leri mesosomatous lipomatosis
A rare, non-cancerous condition with many small fatty lumps under the skin of the forearms, trunk, and upper thighs.
Understanding Roch-Leri mesosomatous lipomatosis
The lumps are 2 to 5 cm wide and appear on the forearms, trunk, and upper thighs. They are generally painless and can be removed with local anesthesia if there are not too many or if they do not run together. GARD says there have been no further descriptions in the literature since 1984.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Multiple fatty lumps (lipomas)
- Firm lumps under the skin
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.
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
GARD lists autosomal dominant inheritance, so one changed copy of a gene can be enough. It does not name a gene.
Also known as: roch leri mesosomatous lipomatosis
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 Roch-Leri mesosomatous lipomatosis.
Explore research for Roch-Leri mesosomatous lipomatosis
Explore actively recruiting Roch-Leri mesosomatous lipomatosis studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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