What is Dercum disease?
Dercum disease - also known as Adiposis Dolorosa, Anders’ syndrome and Dercum-Vitaut syndrome - is a rare condition that is characterized by multiple, painful fatty lipomas (benign, fatty tumors) that occur chiefly in post-menopausal, obese women of middle age. However, although it is 20 times more common in women, 16 percent of the reported cases are males and it can also occur in people who are not obese
The lipomas are located primarily on the trunk region and on the extremities close to the trunk. Unlike ordinary lipomas, there is also pain that can be severe and sometimes debilitating. Dercum disease is a chronic condition, meaning that it is a long lasting condition. In addition, it tends to be progressive.
Top of page
What are the symptoms of Dercum disease?
This syndrome consists of four cardinal symptoms: (1) multiple, painful, fatty masses; (2) generalized obesity, usually in menopausal age; (3) weakness and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion and dementia.
The pain can last for hours, can be paroxysmal (occurring only at certain times) or continuous, and worsens with movement. Dercum disease is often associated with generalized weakness, depression, and irritability. The condition can also be associated with early congestive heart failure, myxedema (a condition associated with severe hypothyroidism), joint pain, paroxysmal flushing episodes, tremors, cyanosis (bluish discoloration of the skin), hypertension (high blood pressure), headaches, and epistaxis (nosebleeds).
View an image of a lipoma: Lipoma - arm
From MEDLINEplus, the National Library of Medicine
Top of page
What causes Dercum disease?
The understanding of the cause and mechanism of Dercum disease remains unknown. The origin of the pain is obscure, and the disease is better known as a description of its symptoms rather than as a physiologic or metabolic process. The fatty deposits (lipomas) cause nerve compression and result in weakness and pain.
Some cases reported in the literature have suggested possible causes for Dercum disease, such as the use of corticosteroids, a disturbance of endocrine function, or a genetic cause since it seems to run in some families. Some researchers have suggested that Dercum disease is an autoimmune disorder (a condition that occurs when the body's immune system attacks normal, healthy body tissue). However, no single cause has been pinpointed.
Top of page
What do we know about heredity and Dercum disease?
Dercum disease has been reported to occur in families, and in some of these cases it seems to be inherited as an autosomal dominant trait (this means that one out of a person's two copies of the gene, inherited from one parent, is altered). However, most reported cases of this condition are sporadic (the only case to occur in the family).
Top of page
What is the treatment for Dercum disease?
There is no "cure" for Dercum disease. At the present time, treatment for this condition is symptomatic, meaning that it focuses on one symptom at a time rather than the whole condition. Depending on the person, options can include weight reduction, surgery for the most painful lipomas, and medications to control pain. Liposuction has been used in some cases.
NHGRI Clinical Research on Dercum Disease:
Currently, NHGRI is not conducting research on Dercum Disease
* Current NHGRI Clinical Studies
* Search all studies on ClinicalTrials.gov [clinicaltrials.gov]
* Clinical Research FAQ
I have developed lumps/nodules/lesions all over my body. They started six years ago and seemed to start on my trunk. Now they are all over my body including my face. It is not painful in one area, my whole skin hurts or should I say subcutaneous tissue/fatty tissue. It seems that it is now spreading to my muscles now. It hurts to move or do anything. I don't know if I have Dercum's Disease, I believe I will never figure out what is under my skin and unbearable. My lumps/lesions hurt worse if I am touched.They also go inwards and do not stick outwards. I read if that they get into your lungs, that is all it takes. I hope you do not have this ugly disease and by the way, I have been to many different specialists and none of them take ownership of this disease.
Good Luck and God Bless,
hi going threw loads of test to many to list got mri friday
symtoms as above fatty lympomas all over stomac, ribs and some in arms in constant pain as been suggested it could be dercums ,but will not diagnose untill all test are complete,
just started a anty depresent wich is good for nerve blocking aswell helps a little bit but still not happy
I wish HERTOHELP, helped me when I first came to this site! He/she provides very good information. I have been studying this disease for some weeks now since the probability of me having this is high.
In one of my journals/posts are links to a couple of sites.... I can provide you with more if you wish.
It depends on what site your on.. but, most say the same things... I do find a bit of variation though. One site will say one thing and then another site will dismiss it.
Type in Decrums disease into your search engine and there will be lots that come up. Also add, Adiposis Dolorosa (another title for it) to your search as well.
Good luck and keep us posted.
thanx for reply
have also done a lot of reserch into dercums
most docs dont know about it have been on sites you recomend have printed it out and shown docs thay all said thay will look into it
if anyone has a answare for pain releife would be nice to here from you
Type Dr. Karen Herbst into your search engine. She has a cite that may help. She is currently the leading specialist in this area.
As far as controlling the pain... every person is different. no one takes the same medications for this for the most part. It has been found that meds prescribed for all types of arthritis are not successful in controlling the pain for Decrums folks. Other folks may disagree with me... so, you see... You and your Dr. will have to use the "Try and see" method to find out what works best for you.
Sorry I couldn't be of more help.