Overview
Roch-Leri mesosomatous lipomatosis, also known as Roch-Leri syndrome or mesosomatous lipomatosis, is a very rare condition where multiple fatty lumps called lipomas grow on the body, particularly on the trunk and upper limbs. The word 'mesosomatous' refers to the middle part of the body, which is where these fatty growths tend to cluster. These lipomas are benign, meaning they are not cancerous, but they can grow large enough to cause discomfort, limit movement, or affect appearance in ways that impact daily life and self-confidence. The fatty lumps develop under the skin and can vary in size. In some people, they remain small and cause little trouble. In others, they grow larger and may press on nearby nerves or tissues, causing pain or a feeling of tightness. The condition is classified under lipomatosis disorders, which are conditions involving abnormal fat deposits in the body. Treatment is mainly focused on managing symptoms. Surgical removal of troublesome lipomas is the most common approach when lumps cause pain, restrict movement, or create cosmetic concerns. There is no known cure or medication that stops new lipomas from forming. Because this condition is so rare, research is limited and most care is guided by general lipomatosis management principles.
Key symptoms:
Multiple soft, movable fatty lumps under the skinLumps mainly on the trunk, shoulders, and upper armsDiscomfort or pain if lumps press on nervesFeeling of tightness or heaviness in affected areasChanges in body shape or appearance due to fatty growthsPossible restricted movement if lumps grow near jointsGradual increase in number or size of lumps over time
Clinical phenotype terms (4)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Roch-Leri mesosomatous lipomatosis.
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Specialists
View all specialists →No specialists are currently listed for Roch-Leri mesosomatous lipomatosis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Roch-Leri mesosomatous lipomatosis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How certain are you about this diagnosis, and what other conditions were ruled out?,Should I have genetic testing to look for a related hereditary condition?,Which of my lipomas are most likely to need surgical removal, and when?,How often should I come in for monitoring, and what changes should prompt an urgent visit?,Are there any clinical trials or research studies I could participate in?,Could my family members be at risk, and should they be evaluated?,Are there any lifestyle changes or treatments that might slow the growth of new lipomas?
Common questions about Roch-Leri mesosomatous lipomatosis
What is Roch-Leri mesosomatous lipomatosis?
Roch-Leri mesosomatous lipomatosis, also known as Roch-Leri syndrome or mesosomatous lipomatosis, is a very rare condition where multiple fatty lumps called lipomas grow on the body, particularly on the trunk and upper limbs. The word 'mesosomatous' refers to the middle part of the body, which is where these fatty growths tend to cluster. These lipomas are benign, meaning they are not cancerous, but they can grow large enough to cause discomfort, limit movement, or affect appearance in ways that impact daily life and self-confidence. The fatty lumps develop under the skin and can vary in size
At what age does Roch-Leri mesosomatous lipomatosis typically begin?
Typical onset of Roch-Leri mesosomatous lipomatosis is adult. Age of onset can vary across affected individuals.