Dercum’s disease is a loose connective tissue disorder. It is characterised by chronic pain (longer than 3 months) in adipose tissue (tissue containing fat cells), non-cancerous slow-growing fatty lumps under the skin called lipomas, and overweight or obesity.^1-3 Dercum’s disease mainly affects adults and is much more common in women.^1,4

Dercum’s disease can affect different areas of the body. The following categories have been proposed based on the size and location of affected areas:³

• Generalised diffuse – widespread pain from fatty tissue without clear lipoma
• Generalised nodular – pain around lipomas in multiple parts of the body
• Localised nodular – pain in lipomas in limited areas of the body
• Juxta-articular – painful folds of fat near the joints such as knee, hip or elbow

Synonyms: Adiposis dolorosa, adipolsalgia, adipose tissue rheumatism, fatty tissue rheumatism, juxta-articular adiposis dolorosa, lipomatosis dolorosa, morbus Dercum’s.^1,2

Universal rare disease classifications provide a common language for recording, reporting and monitoring diseases. Please visit the Rare Disease Classifications page for more information about these internationally recognised classifications.

ORPHA:36397 Adiposis dolorosa

ICD-11: EF02.1 Subcutaneous lipomatosis

Some common symptoms of Dercum’s disease include:^3,4

• pain in fatty/adipose tissues described as burning, aching and searing
• growth of fatty lumps called lipomas under the skin. The size and location of lipomas can vary between individuals. Common areas of lipomas growth are the legs, arms, trunk and buttocks
• overweight or obesity
• fatigue or weakness
• joint and muscle aches
• bruise easily
• sleep disturbances
• emotional changes such as mood swings, poor memory, depression and anxiety
• rapid heartbeat
• shortness of breath

Please speak to your medical team to learn more about the signs and symptoms of Dercum’s disease.

Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability. Majority of the estimated two million Australians living with a rare disease meet the Australian Government’s definition for disability (in accordance to the Australian Public Service Commission and Australian Bureau of Statistics), and many experience severe and permanent disability impacts. If you or someone you care for is experiencing disability-related impacts from a rare condition, please speak with a health or disability professional for advice. Information about relevant disability support can be found at the RARE Portal’s Disability Support Information page.

The cause of Dercum’s disease is unknown.¹

Diagnosis of Dercum’s disease may be made based on:³

• physical examination
• imaging tests such as ultrasound and magnetic resonance imaging (MRI) to detect lipomas under the skin.
• diagnosis of exclusion, which means that all other possible causes of the pain need to be ruled out

Doctors may perform additional tests to rule out other conditions that have similar symptoms (differential diagnosis), such as lipoedema, multiple symmetric lipomatosis, familial multiple lipomatosis, fibromyalgia, panniculitis (inflammation of fat layer below the skin), endocrine disorders and adipose tissue tumours.^3,5

Please speak to your medical team to learn more about the available diagnostic pathways for Dercum’s disease.

There is currently no curative treatment for Dercum’s disease. Treatment is targeted at managing symptoms (symptomatic management) and involves a multidisciplinary care team. This may include liposuction and surgical treatments to remove lipomas, and medications to manage chronic pain.^2,3

Please speak to your medical team to learn more about the possible treatment or management options for your condition. Treatment will depend on an individual’s specific condition and symptoms. It is also important to stay connected to your medical team so that you can be made aware of any upcoming clinical trial opportunities.

Clinical care for rare diseases often involves a multidisciplinary team of medical, care and support professionals. Please note that the information provided here is as a guide and that RVA does not necessarily monitor or endorse specific clinics or health experts.

Healthcare professionals involved in the care of individuals with Dercum’s disease may include general practitioners (GP), dermatologists, pain management physicians, endocrinologists, plastic surgeons, neurologists, psychologists and others. The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.

We are not aware of any clinical care guidelines for Dercum’s disease in Australia. If you know of any relevant care guidelines, please let us know via the Contribute page.

The following guidance is available from international experts outside Australia; however, there may be information that is not relevant or applicable to the Australian context, and may not be up to date:

• Review of Dercum’s disease and proposal of diagnostic criteria, diagnostic methods, classification and management developed by health professionals in Sweden, published in 2012.
• Dercum’s disease (adiposis dolorosa): a review of clinical presentation and management developed by health professionals in Poland, published in 2019.

Individuals living with rare diseases may have complex medical issues and disabilities, which are not always visible. It is often useful to refer to their medical history as well as personal information such as a medical card, doctor’s letter, or if available, a rare disease passport, for relevant information.

There are specific considerations around participating in rare disease research, including clinical trials. It is important to be mindful of issues such as data privacy, research ethics, consent and differences in research regulations between Australia and other countries.

If you are interested in finding clinical trials for your condition, please visit the following websites; however, there may not be any clinical trials available:

• Australian Clinical Trials
• ClinicalTrials.gov

It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.

Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance and activities.

We are not aware of any rare disease organisations for Dercum’s disease in Australia. If you are aware of any relevant Australian organisations, please let us know via the Contribute page.

International Organisation:
The Dercum Society (United States of America)
Website: https://dercums.org/

Please note that RVA does not monitor or endorse each group/organisation’s operational governance and activities. When engaging with a group, please consider the information on the RARE Portal’s Finding Helpful Peer and Community Supports page.

Dercum’s disease varies between individuals, and each person’s experience is unique.

If you would like to share your personal story with RVA, please visit the Rare Voices Australia: Share Your Story page. RVA will consider your story for publishing on our website and inclusion on the RARE Portal.

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

People living with a rare disease, including families and carers, often face unique challenges such as diagnostic delays, misdiagnoses, limited treatment options, and limited access to rare disease specialists and support. These challenges may impact people’s emotional wellbeing and quality of life. Many people find it helpful to seek mental health and wellbeing support to cope with ongoing stress and uncertainty. Connecting with people who have shared experiences through a support group may also be helpful. Information about relevant mental health and wellbeing support can be found at:

• Mental Health and Wellbeing Support for Australians Living with a Rare Disease
• The National and State Services pages underneath the ‘Mental Health’ sections listed

Further information on Dercum’s disease can be found at:

• National Organization for Rare Disorders (NORD): Dercum’s Disease
• DermNet: Dercum disease

Online Mendelian Inheritance in Man, OMIM^®:%103200 Adiposis dolorosa

Orphanet: Adiposis dolorosa

This page has been developed by Rare Voices Australia (RVA)’s RARE Portal team.

If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.