Overview
Acquired generalized lipodystrophy (AGL), also known as Lawrence syndrome or Lawrence-Seip syndrome, is a rare condition where the body loses most of its fat tissue (adipose tissue) under the skin and around the organs. Unlike inherited forms of lipodystrophy, AGL develops during a person's lifetime — it is not present at birth. The fat loss usually happens gradually and affects the whole body, giving the skin a thin, almost muscular appearance. Because fat tissue plays an important role in storing energy and producing hormones like leptin, losing it causes serious problems throughout the body. People with AGL often develop insulin resistance, which means the body cannot use blood sugar properly, leading to diabetes. High levels of fats (triglycerides) in the blood are also very common and can cause dangerous inflammation of the pancreas. The liver often becomes enlarged and filled with fat, which can lead to liver disease over time. Treatment focuses on managing complications rather than curing the condition. A strict low-fat, low-sugar diet is a cornerstone of care. Metreleptin (brand name Myalept), a synthetic form of the hormone leptin, is FDA-approved and has significantly improved outcomes for many patients by helping control blood sugar and triglyceride levels. Regular monitoring by a team of specialists is essential to prevent serious long-term complications.
Key symptoms:
Loss of fat tissue under the skin across the whole bodyVisible muscles and veins due to lack of body fatHigh blood sugar or diabetesVery high triglyceride (blood fat) levelsEnlarged liver (hepatomegaly)Fatty liver diseaseAcanthosis nigricans — dark, velvety patches of skin, often in skin foldsEnlarged spleenIrregular or absent menstrual periods in womenExcessive hunger and appetiteFatigue and low energyAbdominal pain (sometimes from pancreatitis)Polycystic ovary syndrome (PCOS)-like symptoms in women
Clinical phenotype terms (28)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsRegeneron Pharmaceuticals — PHASE3
Amryt Pharma — PHASE3
Zhongnan Hospital
Ruijin Hospital
Regeneron Pharmaceuticals — PHASE3
Shanghai Jiao Tong University School of Medicine
Rahul Aggarwal — PHASE1, PHASE2
University of Kansas Medical Center
Children's Hospital of Fudan University — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableMYALEPT
indicated as an adjunct to diet as replacement therapy to treat the complications of leptin deficiency in patients with congenital or acquired generalized lipodystrophy
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
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to Acquired generalized lipodystrophy.
Community
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Start the conversation →Latest news about Acquired generalized lipodystrophy
Disease timeline:
New recruiting trial: Pulmonary Hypertension Biorepository and Registry
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: 64Cu-GRIP B in Patients With Advanced Malignancies
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: Open-label Study to Evaluate Metreleptin in Children Under 6 Years of Age With Generalised Lipodystrophy
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: PET Imaging Targeting Granzyme B Predicts Immunotherapy Efficacy in Diffuse Large B-cell Lymphoma
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: GzmB-PET/CT to Evaluate Neoadjuvant Therapy Efficacy in Breast Cancer
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: Registry for Patients With Lipodystrophy
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: Efficacy and Safety of Mibavademab in Adult and Pediatric Patients With Generalized Lipodystrophy
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
New recruiting trial: MEASuRE: Metreleptin Effectiveness And Safety Registry
A new clinical trial is recruiting patients for Acquired generalized lipodystrophy
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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.What tests do I need to find out if there is an underlying cause for my fat loss, such as an autoimmune condition?,Am I a candidate for metreleptin (Myalept) therapy, and how do I access it?,What specific diet should I follow, and can I be referred to a specialist dietitian?,How often should I have my liver, blood sugar, and triglyceride levels checked?,What are the warning signs of pancreatitis or other emergencies I should watch for?,Are there any clinical trials or new treatments I should know about?,How will this condition affect my fertility or hormonal health long-term?
Common questions about Acquired generalized lipodystrophy
What is Acquired generalized lipodystrophy?
Acquired generalized lipodystrophy (AGL), also known as Lawrence syndrome or Lawrence-Seip syndrome, is a rare condition where the body loses most of its fat tissue (adipose tissue) under the skin and around the organs. Unlike inherited forms of lipodystrophy, AGL develops during a person's lifetime — it is not present at birth. The fat loss usually happens gradually and affects the whole body, giving the skin a thin, almost muscular appearance. Because fat tissue plays an important role in storing energy and producing hormones like leptin, losing it causes serious problems throughout the bod
How is Acquired generalized lipodystrophy inherited?
Acquired generalized lipodystrophy follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Acquired generalized lipodystrophy?
Yes — 6 recruiting clinical trials are currently listed for Acquired generalized lipodystrophy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Acquired generalized lipodystrophy?
25 specialists and care centers treating Acquired generalized lipodystrophy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Acquired generalized lipodystrophy?
1 patient support program are currently tracked on UniteRare for Acquired generalized lipodystrophy. See the treatments and support programs sections for copay assistance, eligibility, and contact details.