Adiposis dolorosa

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ORPHA:36397OMIM:103200E88.2
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2Active trials4Specialists8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Adiposis dolorosa, also known as Dercum's disease, is a rare and chronic condition where painful fatty lumps (called lipomas) grow under the skin, most often on the trunk, upper arms, and thighs. These lumps are not just cosmetic — they cause significant, often burning or aching pain that can be constant or triggered by touch. The disease most commonly affects middle-aged women, though men and people of other ages can also be affected. Beyond the painful fatty deposits, many people with Dercum's disease experience extreme fatigue, brain fog (difficulty thinking clearly), depression, and joint pain. Some people also notice easy bruising, swelling, and weakness. The combination of pain and fatigue can make everyday tasks very difficult. There is currently no cure for Dercum's disease. Treatment focuses on managing pain and improving quality of life. Options include pain medications, lidocaine infusions, surgical removal of lipomas, and liposuction, though symptoms often return after procedures. A team of specialists is usually needed to manage the many different symptoms of this condition.

Also known as:

Key symptoms:

Painful fatty lumps (lipomas) under the skinChronic widespread pain, often burning or achingExtreme tiredness and fatigueBrain fog or difficulty concentratingDepression or low moodJoint pain and stiffnessEasy bruisingSwelling in the arms or legsWeakness in the limbsWeight gain that is hard to controlSleep problemsHeadachesSkin tenderness even without visible lumps

Clinical phenotype terms (40)— hover any for plain English
Subcutaneous lipomaHP:0001031Sparse axillary hairHP:0002215Sparse pubic hairHP:0002225Abnormal circulating lipid concentrationHP:0003119Painful subcutaneous lipomasHP:0007596Chronic painHP:0012532OverweightHP:0025502Increased total hemolytic complement activityHP:0031905
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
Sep 2025Treatment of Symptomatic Bilateral Knee Osteoarthritis: Intra-articular Injection of Autologous Microfragmented Adipose Tissue and Hyaluronic Acid vs Intra Articular Injection of Autologous Microfragmented Adipose Tissue

Istituto Ortopedico Rizzoli — NA

TrialRECRUITING
Jun 2025Application of Autologous Stem Cells From Adipose Tissue in the Regeneration of Knee Joint Cartilage

Clinical Center of Vojvodina — PHASE4

TrialACTIVE NOT RECRUITING
May 2025A Phase 1/2a to Evaluate the Safety and Efficacy of Adipose Tissue Allograft (BRC-OA) in Patients With Osteoarthritis of the Knee

Britecyte — PHASE1, PHASE2

TrialRECRUITING
Feb 2025Allogenic Adipose-Derived Mesenchymal Stem Cells for the Treatment of Knee Osteoarthritis

Wuxi Cellular Biopharmaceutical Group Ltd. — PHASE3

TrialRECRUITING
Jan 2025Intraglandular Treatment With Adipose-derived Mesenchymal Stem Cells in Patients With Xerostomia Due to Sjögren's Disease

Rigshospitalet, Denmark — PHASE1, PHASE2

TrialRECRUITING
Nov 2024A Study to Evaluate the Efficacy and Safety of CBL-514 Compared to Placebo in Participants With Dercum's Disease Lipomas

Caliway Biopharmaceuticals Co., Ltd. — PHASE2

TrialRECRUITING
Oct 2024Evaluating the Effect of Adipose Tissue Processed With the SyntrFuge™ System for Knee Osteoarthritis

Syntr Health Technologies, Inc. — NA

TrialRECRUITING
Sep 2024Orthobiologic Treatment for Knee Osteoarthritis

University Hospital of North Norway — PHASE2, PHASE3

TrialENROLLING BY INVITATION
Jun 2024Adipose Tissue and Symptomatic Gonarthrosis

Centre Hospitalier Universitaire de Nice — NA

TrialNOT YET RECRUITING
Mar 2024Microfragmented Adipose Tissue Compared to Saline Injection for the Treatment of Knee Osteoarthritis

Lipogems International spa — PHASE3

TrialACTIVE NOT RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Adiposis dolorosa.

2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
Phase 21 trial
A Study to Evaluate the Efficacy and Safety of CBL-514 Compared to Placebo in Participants With Dercum's Disease Lipomas
Phase 2
Actively Recruiting
· Sites: Spokane, Washington · Age: 1864 yrs
Other1 trial
Imaging Lymphatic Function in Normal Subjects and in Persons With Lymphatic Disorders
Enrolling by Invitation
PI: Eva M Sevick, PhD (The University of Texas Health Science Center, Hou) · Sites: Houston, Texas; Houston, Texas +1 more

Specialists

4 foundView all specialists →
AS
Anne Sheu
Specialist
PI on 1 active trial1 Adiposis dolorosa publication
LM
Luca Andriolo, MD
Specialist
PI on 3 active trials1 Adiposis dolorosa publication
ES
Eva M Sevick
Specialist
PI on 1 active trial
KH
Karen L Herbst
TUCSON, AZ
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Adiposis dolorosa.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Adiposis dolorosa

Disease timeline:

New recruiting trial: Treatment of Symptomatic Bilateral Knee Osteoarthritis: Intra-articular Injection of Autologous Microfragmented Adipose Tissue and Hyaluronic Acid vs Intra Articular Injection of Autologous Microfragmented Adipose Tissue

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: A Phase 1/2a to Evaluate the Safety and Efficacy of Adipose Tissue Allograft (BRC-OA) in Patients With Osteoarthritis of the Knee

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: Adipose-Derived Biocellular Regenerative Therapy for Osteoarthritis

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: Allogenic Adipose-Derived Mesenchymal Stem Cells for the Treatment of Knee Osteoarthritis

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: A Phase 2b/3a Study to Evaluate the Efficacy and Safety of JointStem in Patients Diagnosed as Knee Osteoarthritis

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: Evaluating the Effect of Adipose Tissue Processed With the SyntrFuge™ System for Knee Osteoarthritis

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: Intraglandular Treatment With Adipose-derived Mesenchymal Stem Cells in Patients With Xerostomia Due to Sjögren's Disease

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: Bone Marrow Versus Adipose Tissue as a Cell Source for Infiltrative Treatment of Knee Osteoarthritis

A new clinical trial is recruiting patients for Adiposis dolorosa

New recruiting trial: A Study to Evaluate the Efficacy and Safety of CBL-514 Compared to Placebo in Participants With Dercum's Disease Lipomas

A new clinical trial is recruiting patients for Adiposis dolorosa

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 you recommend to confirm my diagnosis and rule out other conditions?,What pain management options are available to me, and which would you recommend starting with?,Are there any clinical trials or research studies I could participate in?,Should I see other specialists, and if so, who would be most helpful for my symptoms?,Is surgical removal or liposuction a good option for me, and what are the chances the lumps will come back?,Are there any lifestyle changes — such as diet or exercise — that might help manage my symptoms?,How will we track whether my treatment is working, and when should I come back for follow-up?

Common questions about Adiposis dolorosa

What is Adiposis dolorosa?

Adiposis dolorosa, also known as Dercum's disease, is a rare and chronic condition where painful fatty lumps (called lipomas) grow under the skin, most often on the trunk, upper arms, and thighs. These lumps are not just cosmetic — they cause significant, often burning or aching pain that can be constant or triggered by touch. The disease most commonly affects middle-aged women, though men and people of other ages can also be affected. Beyond the painful fatty deposits, many people with Dercum's disease experience extreme fatigue, brain fog (difficulty thinking clearly), depression, and joint

At what age does Adiposis dolorosa typically begin?

Typical onset of Adiposis dolorosa is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Adiposis dolorosa?

Yes — 2 recruiting clinical trials are currently listed for Adiposis dolorosa on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Adiposis dolorosa?

4 specialists and care centers treating Adiposis dolorosa are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.