Dercum's Hope - Resources

The information on this site is for educational purposes only. It is not intended to replace consultation and examination by your physician or other health care provider.

Medical Articles
Dercum's for Dummies
Coping with Dercum's
Discussion and Support
Seeds of Hope
Personal Stories
Personal Sites


Medical Articles

Dercum´s disease - a frequently overlooked disease picture (External Link) A translation into English of a recent article in a German neurology journal. The site is hosted by the medical school at the University of Magdeburg.
Learning About Dercum's Disease (External Link) From the National Human Genome Research Institute, at genome.gov, a part of the National Institutes of Health. This was newly updated in July 2006.
Corticosteroid-Induced Juxta-articular Adiposis Dolorosa (External Link) This is the first reported case of adiposis dolorosa occurring as a complication of corticosteroid treatment. Alterations of fat metabolism by corticosteroid excess may have played a role....
eMedicine article (External Link) Article on Adiposis Dolorosa (Dercum's disease) from a large clinical knowledge base for healthcare professionals
Overview article (External Link) English translation from a Swedish medical journal
Chronic Back Pain Can Shrink Brain (External Link) "...the gray matter of the brain can shrink up to 11% in one year in those with chronic back pain, the same amount of brain density that is lost in 10 to 20 years of normal aging."
Health on the Net Foundation (HON) - Dercum's Disease (External Link) There are links here to other web sites and medical journal articles that deal with Dercum's Disease.
Lipoma Definition (External Link) "Symptoms of lipoma include soft, moveable lumps under the skin that are sometimes painful to the touch." --Penn State College of Medicine
Soft Tissue Tumors and Quasi-Tumors (External Link) Pathology Notes by Ed Friedlander, MD - about 70% of the way down the page, says "Neither lipomas nor liposarcomas have any know[n] relationship to obesity."
Inflammation in DD, Dercum Society, Sweden (External Link) "Inflammation plays a part in the syndrome." See English text at top of the page.
Canadian Organization for Rare Diseases (CORD) (External Link) "Through an educational and informational support network, CORD is committed to the enhancement of the lives of all persons affected by rare disorders"
Fysioterapeuten (The Physiotherapist) magazine article (External Link) Article, in Danish, pp. 12-13, by well-known therapist Birte Carstensen. She warns that treating Dercum's patients with exercise & massage will make the patients' condition worse.
The Open Directory Project on Dercum's Disease (External Link) "The Open Directory Project is the largest, most comprehensive human-edited directory on the Web. It is constructed and maintained by a vast, global community of volunteer editors."
Dercum Society in Sweden (External Link) Website with most information in Swedish. This is the oldest society for Dercum's disease, or Morbus Dercum.
NIH - Lipoma (photo) with Text about Adiposis Dolorosa (External Link) "In the rare disease adiposis dolorosa there is swelling of the body and fatty deposits (lipomas) which apply pressure to the nerves, resulting in weakness and sometimes extreme pain."
The Website of Karen L. Herbst, Ph.D., M.D. (External Link) Dr. Herbst is "making an effort to present you with the entire spectrum of painful fatty disorders as soon as possible." Check back often. Site still under construction.

Dercum's for Dummies

Dercum's for Dummies, 2004 Revision Fran's journey through diagnosis, despair and treatment, to hope

Coping with Dercum's

How to Talk to Your Doc Suggestions for communicating with your healthcare providers
The Spoon Theory (External Link) Explaining to others why we can't do all the things we want to do. Written about lupus, so the details are different, but the idea is the same.
What Is Dercum's Disease? Overview of the disease, based on a review of the literature and information from patients
Post-It Archives - June-December 2003 Archives of Dercum's Hope Post-It Board from 2003
Hope Floats: After years of pain, determined woman finally finds relief Article first published in the Santa Maria (California) Times about Fran, October 14, 2004
Dercum's Disease: The Emotional Rollercoaster A composite of emotions Carole has experienced and emotions that others have shared with her.
Internet Health Directory - Dercum's Disease (External Link) Links to sources of information on Dercum's Disease. The site has information on many conditions and disorders.
Post-It Archives - January-June 2004 Archives of Dercum's Hope Post-It Board from January-June 2004

Discussion and Support

CaringBridge (External Link) "Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery."
Directory4Health.com (External Link) Online Health Directory and Health Resource
Dercum's disease support group at Yahoo Groups (External Link) A wonderful place to get and give support. Without that group this website and research study would not be possible.
Lipoma Forum (External Link) Discussion site for all lipomatosis disorders, including DD, Madelung's Disease and Familial Multiple Lipomatosis; owned by Dora (who owns this site) & managed with a team of moderators.

Seeds of Hope

The Twenty-Dollar Bill Prose
Sunflowers Prose

Personal Stories

Nothing in this category yet.

Personal Sites

About Madelung's Disease (External Link) Personal website about Madelung's disease, also known as MSL or Lanois-Bensaude disease
Women in Pain Petition (External Link) "Stop the bias which prevents the ethical and equal treatment of women with chronic pain diseases…now."
For Grace - Women in Pain (External Link) "To ensure the ethical and equal treatment of all women in pain."
CaringBridge (External Link) "Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery."
Dorrit's Site (External Link) Example of a personal site about Dercum's. There are others that may be found by searching for 'dercum' using the search engine of your choice.


Questions? Comments? Feel free to contact us!