This article is a summary of (top researcher) Dr. Karen Herbst’s discussion of Dercum’s Disease or Adiposis Dolorosa as seen on the TV show, Mystery Diagnosis, June, 2010. We wrote almost word for word what she said on the show; we are Dercum’s Disease patients not medical professionals: Sylvia Burleson (Ohio) and Anna Hogbin (West Virginia). We have both suffered this disease for our whole ife and we are in out 60’s. 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 seen patients with Dercum's Disease (DD)), Madelung's Disease and patients with Familial Multiple Lipomatosis (FML or MFL) at the clinic in the VAMC in San Diego.. More information an be found at her website: Dr. Herbst’s website: www.lipomadoc.org
SUMMARY of the PHYSICAL PROCESS
- Dercums Disease (DD) patients have an abnormal body system in which their blood vessels are too porous and leak toxins into the body. Blood vessels in normal people only leak small amounts.
- The DD body system is also less efficient at cleaning up these toxins. The healthy body’s response is to send the toxins to the liver and then remove them from the body.
- In DD, toxins and blood collect outside the blood vessels, causing inflammation and even fermentation.
- The body responds by sending microphage cells to the inflamed area to contain the inflammation.
- The microphage cells combine with the blood and toxins and form lipomas. Each lipomas needs a food source in order to grow. Lipomas grab onto and wrap nerves and muscles while eventually infiltrating body organs.
- As the lipomas grow, they are connected by a ‘web’ of fibrous tissue which forms under the skin and throughout the fat layer. As each lipoma develops its own blood supply/food source, they most often grow in masses in the upper arms, upper legs, abdomen and buttocks. The forearms and lower legs look normal.
- In reaction, the body attempts to utilize the lymphatic system’s fluids to contain the lipomas. This causes unending swelling and pain. An overloaded lymph system cannot move the toxic fluids from the body. ‘Brain Fog’ is a major problem in DD.
- In the most advanced stage of DD, lipomas may invade body organs or the accumulated excess fluid from lipo-lymphedema could even contribute to death from congestive heart failure.
The common symptoms of Dercum’s Disease are lipomas, chronic pain, sleep disturbances, memory lapses, swelling of the body, unexplained weight gain or loss, headaches, tenderness under the feet, general fatigue, heightened pain during allergies or infections, some have a ‘camel hump’ on the upper back, and aching, burning or stabbling in the areas that have lipomas. Diabetes is very common. Family members often have these same symptoms. Lipomas can be right under the skin or deep in the body and vary in size from small peas to softballs. They may be (usually) connected in a fibrous ‘web’ or chain. Some are soft and pliable while others are hard and can be ‘rolled’ when pressed upon. Size can range from that of a small pea to a softball. DD patients usually have a low oxygen level in the cells – ‘why’ is unknown but research continues. Patients are often diagnosed with fibromyalgia, which may coexist with DD. The pain suffered by patients is widespread and relentless. The patient’s immune system is in a continuous state of “high alert”. There may be hereditary factors. At this time, this has not been determined in all cases. Most, but not all, DD patients suffer weight gain in the upper arms, upper legs, and abdominal areas. It is almost impossible to lose DD weight. However, not everyone has a weight problem and some patients are thin or of normal weight. In a normal person, the body burns the lymph in the cells to make energy. Since DD patient’s cells do not burn lymph correctly, the fat cells become giant and and are very heavy. The result is that the fat droops because the cells are so heavy with lymph liquid. A lot of DD patients get an apron of belly fat and a “camel hump” on the upper back along with large upper legs, and buttocks; fat hangs from the upper arm, the upper leg, and the abdomen. The forearms and lower legs often appear normal. The giant fat cells are very hard to loose. Normal fat on a DD patient may be lost by diet and excerise but even vigorous exercise and diet seldom work for DD fat. In fact, vigorous excerise and severe diets usually result in more inflammation and growing more lipomas which, in turn, give the patient excruiating pain and exhaustion, The pain DD patients have does not respond well to pain medications. So patients spend lots of time trying to find something that works. Surgery to remove the lipomas may cause large areas of inflammation and the formation of additional multiple lipomas at the surgery site, along with an excess of post-surgical lymph fluids. In the end, DD is basically a lymphatic disease. In normal people, lymphatic fluid is burned by the cells or excreted by the lymph valves. In DD patients giant fat cells form and retain the lymphatic fluid in the cells where it mixes with the blood from the leaking veins and gut. The result is the formation of painful lipomas which grow in a fibrous ‘web’ or rows and attach to nerves and veins – searching for nutrient filled blood to feed them. The treatment of DD at this time is symptomatic and mainly directed at pain control. Major dietary suggestions and supplement suggestions can be found on Dr. Herbst’s web site. Foods that cause inflammation need to be avoided. Life style changes may be necessary as this can be a progressive, disabling disease. Low level aerobic exercise and walking may be tried because it does work for some. Massage for lymph drainage is often very helpful.
- CURRENT RESEARCH: DD patients probably have defective white blood cells (T-Cells and Killer Cells); either not enough or ineffective in their process
NOTE: since this show, Dr. Herbst has turned her rsearch to the quality and quantity of the patient’s white blood cells – including T-Cells and Killer Cells.
Copies of the TV show were on U Tube but the quality was not good.