Welcome!
Dercum's Hope is being created to provide information and support to
those who suffer from Dercum's disease. We are also working on a scientific
survey to collect information about the signs and symptoms that Dercum's
sufferers experience. The survey is being designed with the cooperation
of several interested doctors, and we hope that it will spur research
on Dercum's disease.
This site is definitely under construction, and additions are being
made frequently. Check back often to see what's new!
As we bring the website together we have periodic chats to exchange ideas.
Anyone interested is welcome to join any of the chats.
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Events
2006-02-12 00:00 (California Time) -
2006-02-16 11:00 (California Time) - Next Chat - Thursday Afternoon (Standard Time is GMT -7 hours) 2006-02-23 16:00 (California Time) - Thursday EVENING Chat (Standard Time is GMT -7 hours)
You can always check on any Thursday between 4:00 pm and 4:30 pm, California time, to see if a chat is in progress. To translate to your time zone, click on the time to go to the World Time Server,
and choose your location from the list.
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News
2008-04-18 - Dr. Herbst Launches Web Site!This is great news! Dr. Herbst has her own web site: http://lipomadoc.org/. Her research includes Dercum's Disease, also known as Adiposis Dolorosa (AD); Madelung's Disease; Familial Multiple Lipomatosis (FML); and FML with lipoma dolorosa (first described in a medical article article dated 1958).
Dr. Herbst has descriptions of the diseases, Recommendations for treatments being tried, and a blog that she updates when she has new information to share. Be sure to read through the Guestbook for information from people who have seen Dr. Herbst, and others who are using suggested treatments. So cool, Dr. H!
What are you waiting for? Read up, and share the information with your doctors. It's not all in our heads. Here's the proof. 2008-04-18 - Journal Article by Dr. HerbstHerbst KL, Asare-Bediako S. Adiposis Dolorosa is More than Painful Fat. The Endocrinologist. Nov/Dec 2007;17(6):326-344.
Your doctor should be able to access a copy of Dr. Herbst's article. Patients can check with their local libraries about obtaining a copy. Some have access to medical journals available to users.
By going here: http://health.groups.yahoo.com/group/Dercums_Disease/, you can join this support group. In the Files section, there is a folder for Dercum's Disease '07 Articles. The article can be dowloaded from there by members only.2007-11-29 - Donate to Research
Karen L. Herbst, PhD, MD, is a research endocrinologist at the VA Hospital in San Diego, California USA, and Assistant Professor of Medicine at the University of California at San Diego (UCSD). She is doing research on Lipomatosis Disorders. Since March 2006, she has been seeing patients with Dercum's Disease (DD) and Madelung's Disease at her clinic. She has seen patients with Familial Multiple Lipomatosis (FML, or MFL), too.
If you wish to donate to the research conducted by Dr. Herbst on DD, Madelung's or FML, you may click on the button above. Or, you can access a sample letter and mailing information from Dr. Herbst's web site if you prefer to send a check to the Veteran's Medical Research Foundation.
If you shop online, shop through iGive: http://www.iGive.com/DercDz or http://www.iGive.com/DDWG (the two sites both represent Dercum's disease as well as FML, MSL, etc. so visit either site). Simply visitng a store provides research donations.
Thanks for your help!2007-11-29 - Help Our Research -- Fill Out a Questionnaire!If you have a diagnosis, and want to help the research on Dercum's Disease (DD), Madelung's Disease, and Familial Multiple Lipomatosis (FML), send an e-mail to Karen L. Herbst, Ph.D., M.D. Subject should be "Questionnaire Request." When you get your copy fill it out and return it ASAP.
You can reach Dr. Herbst by e-mailing her at:
Karen.Herbst@va.gov.
Or you can call her office in San Diego, California, USA, at 858-552-8585, x7384. Do it right now! |
Dercum's Hope