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Information Sheet about Dercum’s Disease

Other Names

Dercum Disease; Adiposis Dolorosa; Fatty Tissue Rheumatism; Juxta-Articular Adipose Dolorosa; Lipomatosis Dolorosa Morbus Dercum’s; Adiposalgia; Adipose tissue rheumatism; Neurolipomatosis; Anders Syndrome; Dercum-Vitaut Syndrome

Categories

Skin Diseases.

Signs and Symptoms

Dercum’s disease is a rare condition where painful folds of fatty (adipose) tissue or the growth of multiple noncancerous (benign) fatty tumours called lipomas occur. These slow growths can occur anywhere on the body but are most often found on the torso, buttocks, and upper parts of the arms and legs and are found just below the skin. The growths can burn and ache, with the pain coming and going for some people, and being continuous for others. Sometimes the pain may worsen with movement.

Other signs and symptoms may include:

  • easy bruising, flushing
  • swelling of various areas of the body, especially the hands
  • digestive problems
  • heavy or prolonged menstrual bleeding
  • unexplained blood in the urine
  • a rapid heartbeat
  • general weakness and tiredness
  • sleep problems
  • stiffness after resting, especially in the morning
  • depression, irritability and/or confusion
  • migraine headaches
  • recurrent seizures (epilepsy)
  • progressive decline in memory and intellectual function (dementia).

Dercum’s disease mainly occurs in adults with more women affected than men and it is often seen in women who are overweight or obese. Signs and symptoms typically appear between the ages of 35 and 50.

Cause/Inheritance

  • The exact cause of Dercum’s disease is unknown.
  • Dercum’s disease seems to occur spontaneously for no apparent reason (sporadic).
  • The condition may have a genetic component because a few families with several affected family members have been reported. However, no associated genes have been identified.
  • Some medical literature suggests that Dercum’s disease may be an autoimmune disorder, however there is no firm evidence of this.

Treatment and Management

No specific treatment exists for Dercum’s disease but there is a focus on trying to relieve and manage pain. Surgery and/or liposuction may be helpful for some people; however, lipomas will often recur or increase in number at same site or nearby. Weight loss may help with joint pain for some, but it is often difficult to achieve and generally doesn’t relieve symptoms.

Support Contacts International

MD Junction Dercum’s Disease Support https://www.mdjunction.com/dercums-disease

Facebook Support

Pacific Australia Rare Fat Disorders Support Group https://www.facebook.com/groups/254369064687807/

Dercum’s Information Group https://www.facebook.com/groups/dercumsinformationgroup/

Dercum’s Network https://www.facebook.com/groups/DercumNETWORK/?ref=br_rs

Dercum’s disease https://www.facebook.com/groups/AdiposisDolorosa/

Dercum’s Research https://www.facebook.com/groups/DercumsResearch//

Sources

Genetics Home Reference https://ghr.nlm.nih.gov/condition/adiposis-dolorosa#resources

National Organisation for Rare Disorders https://rarediseases.org/rare-diseases/dercums-disease/

Genetic and Rare Diseases Information Center https://rarediseases.info.nih.gov/diseases/5750/adiposis-dolorosa Orphanet https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=10426&Disease_Disease_Search_diseaseGroup=dercums-disease&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group%20of%20diseases=Adiposis-dolorosa&title=Adiposis%20dolorosa&search=Disease_Search_Simple

 

Disclaimer: This information is for general use only and is not meant to be a substitute for seeking professional care in the diagnosis, treatment and management of this condition.

Last update Sept 2019