[If you got to this page because you were searching for information on Dercum's Disease (aka Adiposis Dolorosa), then the best place to start is the Dercum's Disease Home Page]
This is a new support group that we have started to link together all our online friends and fellow sufferers!
The reason for the creation of this support group is that it was very difficult to contact the support group referenced on the NORD website -- The Dercum Connection. And that support group no longer exists.
Name: Dercum's Support
Address:
PO Box 350
Somis, CA 93066
Phone: (805) 386-3125
e-mail: Maureen at dercumdata@aol.com
Website URL: http://www.dercum.org (this site right here!)
Users: Patients/Family Members. General Public. Health Professionals. Medical Researchers.
Keywords:
Dercum's Disease, Dercum disease, Adiposis Dolorosa
Year Established: 1998
Members: ~250+
Chapters: None.
Mission:
The mission and purpose of this group is simple - to move towards eradicating the pain and
suffering of Dercum's Disease. To find a cause and cure of this dreaded disease and to
share information with sufferers, their family and friends, researchers, doctors and any
interested party.
Dercum's is a little understood disease, which is accompanied by isolation of the sufferers. The group will be used to support those affected by the disease and help reduce their isolation.
This web site provides a forum for anyone with the disease to publish their story, to look at some of the research, and to correspond with others who have this disease.
Being a website, the information is available 24 hours a day, seven days a week, and accessible by anyone who has a computer, an internet connection and a web browser, or a friend with that same equipment, or who has access to a public library with an internet connection (in most areas).
Membership:
If you want to join, send an e-mail to Maureen with your name, e-mail address
and what ever other information you like (such as your location and/or address and phone
number, type & extent of disease, treatments tried, length of time with the disease,
problems encountered with diagnosis/treatment, situations that aggravate the disease, what
you'd like from the support group, etc.).
We have considered that those of you with the disease who have signed the guestbook, or corresponded with Maureen are already members. Let us know if this is wrong.
Last updated 18 Nov 2003
Comments about the web page format
should be sent to the Don
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.