About Dercum's

The following information is an exerpt from the Adiposis Dolorosa article on Emedicine at http://emedicine.medscape.com/article/1082083-overview

Author
Marjan Yousefi, MD  Department of Dermatology, Geisinger Medical Center

Background

First described in 1892 by the American neurologist Francis Xavier Dercum at Jefferson Medical College in Philadelphia, Penn, Dercum disease (adiposis dolorosa) is an unusual progressive syndrome of unknown etiology characterized by multiple painful lipomas that arise in adult life, most often affecting postmenopausal women who are obese. The onset of Dercum disease (adiposis dolorosa) is insidious. The pain is out of proportion to the physical findings and is often described by patients as "all fat hurts." The pain increases with increases in fatty tissue and in connection with menstruation. Estrogen replacement at menopause does not reduce the pain.
Since the original description of Dercum disease (adiposis dolorosa), the clinical spectrum has changed to include, in addition to the painful nodular fatty deposits, other components of Dercum disease (adiposis dolorosa). General obesity; fatigability; weakness; and a wide variety of unexplained emotional disturbances, such as depression, confusion, and dementia, are reported. This observation is why Dercum disease has been proposed to be relabeled as Dercum syndrome.
Dercum disease (adiposis dolorosa) has been classified by the World Health Organization (WHO), and a paraphrase from the National Organization of Rare Diseases (NORD) says "Dercum Disease is a rare disorder in which there are fatty deposits which apply pressure to the nerves, resulting in weakness and pain. Various areas of the body may swell for no apparent reason. The swelling may disappear without treatment, leaving hardened tissue or pendulous skin folds."

 

Criteria for diagnosis

Dercum disease (adiposis dolorosa) consists of 4 cardinal symptoms: (1) multiple, painful, fatty masses; (2) generalized obesity, usually in menopausal age; (3) asthenia, weakness, and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion, and dementia.

 

Associated conditions

Associated conditions include sleep disturbances and pickwickian syndrome; slight-to-moderate dryness of the eyes and the mouth, with a gritty feeling in the eyes in spite of normal tear production (the criteria for Sjögren syndrome are not completely satisfied); an irritable bowel; coccygodynia; vulvovaginitis; vulvodynia; carpal tunnel syndrome; Tietze syndrome; chondromalacia patellae; thyroid malfunction, mainly hypothyreosis; trochanteritis; localized tendonitis; and onset of fibromyalgia (sometimes).

 

Mode of inheritance

Dercum disease (adiposis dolorosa) is believed to be transmitted in an autosomal dominant manner; it is particularly strong in the line of great grandmother-mother-daughter; however, most reported cases of adiposis dolorosa are sporadic.

 

Our own "Findings"


First of all, we need to point out that we are neither doctors nor medical researchers (excepting for the countless hours we spend researching about Dercum’s and everything related to the disease).
We now know that it is not just overweight, post-menopausal women who suffer from Dercum’s Disease.    We have heard from people who realize now that the first symptoms of Dercum’s had come on as early as childhood.  Right now the stats say that only 1 in 20 sufferers of DD are men but with this disease going so undiagnosed this is only what can be taken from people who know they have Dercum’s.
Excess stress, whether physical or mental, can exasperate this disease.  Though over 120 years ago there was not as much toxins in the food we ate, clothes we wore, medicines we took, beauty products we used, there is a good chance that these unnatural things play a part in this disease.  Making even a few lifestyle changes may slow down the progression of Dercum’s.
We have heard people say absolutely NO exercise, but what that statement really should say is no excess exercise.  Since fat disorders seem to have a weak, leaky lymphatic system in common, some exercise is actually recommended to get the “lymph flowing”.  We will list some of this in the treatment section.
Cure Dercum’s is a place where we will give information and hopefully views on all options.  Anything that we suggest is just that, suggestions.  You should always check with your doctor and, most of all, feel comfortable in anything you try. 
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