Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.
Age of Onset
Autosomal dominant ?A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease
Autosomal recessive ?Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype
X-linked dominant ?X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
X-linked recessive ?Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder
Mitochondrial or multigenic ?Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.
Multigenic or multifactor ?Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.
Other Names (AKA)
Dercum disease; Dercum's disease
Adiposis dolorosa is a rare condition characterized by the growth of multiple, painful, lipomas (benign, fatty
- painful lipomas
- memory disturbances
- difficulty forming and expressing thoughts
- rapid, unexplained weight gain
- vascular problems (angiolipomas)
- easy bruising
- heavy or prolonged menstrual bleeding
- unexplained blood in the urine (hematuria)
- non-pitting edema in subcutaneous fat
- gastroesophageal reflux (GERD)
- irritable bowel syndrome and other gastrointestinal problems
- feeling of fullness
- joint pain and/or stiffness (especially when fat deposits are present)
- muscle pain and stiffness
- shortness of breath
- tachycardia (rapid heart rate)
- sleep disturbances (insomnia)
- depression and/or anxiety
This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
|Medical Terms||Other Names||
|80%-99% of people have these symptoms|
Excessive, persistent worry and fear
[ more ]
Having too much body fat
Firm lump under the skin
Growth of abnormal tissue under the skin
[ more ]
|30%-79% of people have these symptoms|
|Sparse axillary hair||
Limited armpit hair
Little underarm hair
[ more ]
|Sparse pubic hair||
Decreased sexual hair
|5%-29% of people have these symptoms|
[ more ]
[ more ]
Loss of developmental milestones
Mental deterioration in childhood
[ more ]
[ more ]
Pins and needles feeling
[ more ]
|Recurrent skin infections||
Skin infections, recurrent
[ more ]
|Telangiectasia of the skin||0100585|
Dry mouth syndrome
[ more ]
|Percent of people who have these symptoms is not available through HPO|
[ more ]
|Middle age onset||0003596|
|Painful subcutaneous lipomas||
Painful noncancerous fat tissue tumor under the skin
Because the condition has rarely occurred in more than one person within a family, it may have a genetic component. However, no specific
The origin of the pain associated with the condition is also poorly understood. It is thought that fatty deposits cause nerve compression, resulting in weakness and pain.
The presence or absence of additional symptoms (or the body location of specific symptoms) may affect the specific diagnosis a person receives. For example:
- It has been proposed that those with painful, generalized overweight or obesity of the legs and feet should only be diagnosed with lipedema.
- If there are isolated, painful lipomas or accumulations of fat, the diagnosis should be nodular Dercum’s disease.
- In cases where the criteria are met for fibromyalgia, the primary diagnosis should be fibromyalgia and only if lipomas are also present should adiposis dolorosa also be diagnosed.
- Those who only have excess fat accumulation in the head, neck region, and upper torso should be diagnosed with Madelung’s disease.
The types of doctors that may evaluate person with symptoms of adiposis dolorosa include
There is currently no drug known to change the course of the disease. Available medications mainly focus on alleviating symptoms and may include:
prednisoneor intravenous lidocaine for pain
- traditional pain medicines such nonsteroidal anti-inflammatory drugs (which are often ineffective), or acetaminophen combined with an opioid analgesic
- a cortisone/anesthetic injection for localized pain
- diuretics for swelling of the fingers
Other treatments that have led to some pain reduction in some affected people include methotrexate and infliximab;
Related diseases are conditions that have similar signs and symptoms. A health care provider may consider these conditions in the table below when making a diagnosis. Please note that the table may not include all the possible conditions related to this disease.
Conditions with similar signs and symptoms from Orphanet
The differential diagnosis should include fibromyalgia, other multiple lipoma syndromes such as familial symmetric lipomatosis, Proteus syndrome, MERRF syndrome with lipomatous lesions, neurofibromatosis type 1 (NF1) and multiple endocrine neoplasia type 1 (see these terms).
Visit the Orphanet disease page for more information.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
- DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition.
- MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
- Genetics Home Reference (GHR) contains information on Adiposis dolorosa. This website is maintained by the National Library of Medicine.
- The National Human Genome Research Institute's (NHGRI) website has an information page on this topic. NHGRI is part of the National Institutes of Health and supports research on the structure and function of the human genome and its role in health and disease.
- The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
- Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
- MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
- The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
- Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
- Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
- PubMed is a searchable database of medical literature and lists journal articles that discuss Adiposis dolorosa. Click on the link to view a sample search on this topic.
- Hansson E, Svensson H, Brorson H. Review of Dercum's disease and proposal of diagnostic criteria, diagnostic methods, classification and management. Orphanet Journal of Rare Diseases. 2012; 7:23.
- Herbst KL. Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacol Sin. 2012 Feb;33(2):155-72.
- Emily Ryder. Dercum disease. DermNet NZ. May, 2014; https://www.dermnetnz.org/dermal-infiltrative/dercum.html.
- Laura F McGevna. Adiposis Dolorosa. Medscape Reference. February 6, 2015; https://emedicine.medscape.com/article/1082083-treatment.
- Learning About Dercum Disease. NHGRI. June 27, 2012; https://www.genome.gov/17516629.
- Dercum's Disease (DD). Fat Disorders Research Society. https://www.fatdisorders.org/dercums/.
- Emma Hansson, Henry Svensson, and Håkan Brorson. Review of Dercum’s disease and proposal of diagnostic criteria, diagnostic methods, classification and management. Orphanet J Rare Dis. 2012; 7:https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-7-23.
- Adiposis dolorosa. Genetics Home Reference. July, 2012; https://ghr.nlm.nih.gov/condition/adiposis-dolorosa.
- Dercum's disease. NORD. 2012; https://rarediseases.org/rare-diseases/dercums-disease/.