During the course of learning about Dercum's Disease, a lot of
data and references were found on the internet, using a variety of search engines.
This page points to the stuff I've found. Here you read about them! And maybe
find them for yourselves ... (editorial comments are in blue)
If anyone finds any other links of interest, please send
them to me
Major Dercum-related links
- PubMed References
- This is a list of all the Dercum, Adiposis Dolorosa articles and a few other applicable
references (67 so far) I was able to find in the PubMed Data base and some other places
(The link below explains how to get there). An index/database is
NOT in the works,
entry on Dercum's
- This link takes you to the National Organization for Rare Diseases (a private,
non-profit, organization) site that discusses the disease and provides other information
-- most of which is duplicated here. This is confirmation that Dercum's is a rare disease.
- Dercum's Articles available on line
This link takes you to a page that describes articles that are
available on this site.
- Lipoma Forum
- A NEW community devoted to sharing information,
providing resources and offering support to those who suffer from lipomas,
Dercum's, MSL or any related illnesses.
- The Online
Mendelian Inheritance in Man (OMIM) Site
This link takes you to the OMIM page that describes (poorly) Adiposis Dolorosa (Dercum Disease). If you know how, you
can get to a great deal of reference material from the links here. If not, use the next
- This is the way I got the list of Pub Med References in the above page. This is
the first page of a list of documents related to the JM Cantu article below. Some talk
about Dercum or Adiposis Dolorosa, some have abstracts, some need Russian or Norwegian or
Dutch translators, and some are totally unrelated (or so it seems). I've
extracted the data in the PubMed References, above, to save
you some effort ^.
- Dorrit Hvam's Dercum's Disease Page (Danish)
- Dorrit put together a website in Danish. Use Microsoft Internet Explorer or
Netscape 6.x (Netscape 4.77 doesn't work) Click on the "Union Jack"
link to get her English version.
- Swedish Dercums sjukdom
- This is Marie Hallsten's site, in Swedish. Use Microsoft Internet Explorer
(Netscape 4.77 doesn't work) Click on the "Dercums disease" link to get
her English summary page.
Of Interest: A German dermatological
website has (or had) a questionnaire for Dercum's Disease (or adiposita dolorosa in
German) All sufferers should go fill it out here
(go to the bottom of the page). Might mean more visibility for the disease!
NOTE: Some people have had difficulty completing the
questionnaire successfully - so I suggest that you save your answers in a separate
document (like the notepad). If you have to do it again, you won't have to remember
what you wrote the first time! (I have written to the site and have been ignored.)
- "Lipoma Excision,"
American Family Physician, March 1, 2002: 901-905.
- And this article is on lipoma excision, by Gohar A. Salam, M.D., D.O., though I don't
think the Dercum's lipomas are as easy to remove as the one cartooned ...
- NCBI PubMed
- This is THE search tool for searching MEDLINE, the NIH Medical Data base. I used it
extensively to gather the references. It used to be called the "Internet
- CNet Search
- Originally, this was called SAVVY SEARCH, which automatically searches up to 11 search
engines for each query. It even finds this site ;-). See what you think. Even
though it got co-opted, it's still a good, general purpose, tool!
[NOTE: Because it goes out to several search engines, the results for the same
search will differ based on how many search engines reported back. I have gotten
anywhere from 15 to 36 results for the same search!]
Minor Dercum-related links
The content of the reference
is provided, along with the link where you can find it.
- Dr. Ed Friedlander's
Chapter on Bones & Soft Tissue
- This link takes you to an online medical/pathology text book. This section is on bones
and soft tissue, and it is quite educational. However, the only comments he makes about
"*In adiposis dolorosa ("Dercum's disease"), presumably an
anti-oncogene deletion syndrome, the patient has hundreds of lipomas which may hurt.
William Osler called this one of the three worst diseases of his time (with subluxation
of the sacroiliac joint and milk leg). Today we're discovering that liposuction is an
At least in adiposis dolorosa (and we may conjecture, in other lipomas), the fat isn't
burned very well for energy (Clin. Sci. 81: 793, 1991)."
Based on some research we've done, and people
we've spoken to, liposuction might not be an effective treatment for everyone, even
though it is touted here and elsewhere. Ask Maureen about her research..., or read the Yahoo! Group on Dercum's Disease
I do not fully understand what
an "anti-oncogene deletion syndrome" is.
- Dr. Ed Friedlander's Chapter on
CANCER: CAUSES AND EFFECTS (discussing tumors)
- This is link to another one of his chapters -- this time he mentions adiposis dolorosa,
but in a different vein. Even though the lipomas (tumors) are benign, they can cause
problems just by being, and he lists a number of examples:
"EFFECTS OF BENIGN
TUMORS ON THE PATIENT
Some benign tumors cause serious problems because of their location (one unfortunate
expression is "malignant by location"). These include:
pituitary adenomas crushing the normal pituitary and optic nerves
craniopharyngiomas destroying the hypothalamus
meningiomas compressing the brain
colloid cysts blocking the flow of cerebrospinal fluid
pleomorphic adenoma of the salivary gland encasing the facial nerve
Other benign tumors cause serious problems by other means. These include:
Too many tumors (innumerable painful lipomas in
"adiposis dolorosa"; innumerable nerve tumors in
Von Recklinghausen's; innumerable hamartomas in tuberous sclerosis, etc.)
Hormone production (thyroid adenomas, pituitary adenomas, adrenal adenomas, insulinomas,
vipomas, glucagonomas, reninomas, others)
GI problems (bleeding, obstruction, telescoping, or potassium wasting)
Large size (100 pound ovarian mucinous cystadenomas, etc.)
Torsion and infarction (ovarian tumors)"
- Your Family Health History (This
link has vanished, again. The pertinent information is quoted below.)
- This is an article about creating a family health history, containing a specific
reference to Dercum's, specificallyResearch may even be going on about it ;-)
"nodules and lumps over the body as fatty tumors may be Dercum's disease which
carries with it an increased risk of heart disease. See if there is an autosomal recessive
pattern to it in the family tree."
This article talks about a recessive
inheritance possibility. Other articles and papers talk about it being autosomal dominant.
link had been http://www.jkfa.com/alpub/genetics.htm
So far people have been here.
Dercum's Disease Home Page
18 Nov 2003
Comments about web page format
should be sent to Don
The links provided above are subject
to periodic checking of addresses and content. Listing does not imply endorsement, and the
webmaster is not responsible for the content of the pages. Furthermore, please don't
forget that the information provided on this site is designed to support, not replace, the
relationship that exists between a patient and his or her physician.