“What is Being Done”: An Update by Karen Herbst, PhD, MD

The word ‘anticipation’ reminds one of the commercial depicting hungry people waiting for their super thick ketchup to start flowing. The key here is that the person waiting is hungry. If you are not hungry, you still anticipate the end, but you don’t care as much. So it is with having a fat disorder and waiting on news of any new research or medication or reason to be hopeful – we are all hungry. Let’s face it; there are too few people investigating fat disorders and these are difficult disorders to figure out – most have been around for over 100 years and many people continue to have no diagnosis and others are suffering.

So what is being done? Here is an update:

1. There is no secret treatment for Dercum’s disease. Some people have benefited from one kind of treatment or another. You can find out everything about treatment possibilities by looking at my website (http://www.lipomadoc.org), calling for an appointment at UCSD (619-543-6303) at the VA (858-552-8585) or at my new location, the Center for Advanced Medicine (760-632-9042). I am at the latter location to see patients and to make available the cyclic variations in altitude cycling altitude simulator(aka CVAC) for those patients and for continued research.

2. I (Dr. Herbst) just had a paper accepted for publication: “Pilot Study: Rapidly cycling hypobaric pressure improves pain after five days in adiposis dolorosa. Journal of Pain Research (in press)”. This study describes how ten men and women with adiposis dolorosa had decreased pain and weight after five days and 1-2 sessions a day in the high performance altitude simulator, the Cyclic Variations in Altitude Conditioning™ (CVAC) process. This may get other investigators interested in treating the pain associated with adiposis dolorosa. It also confirms the pain of this syndrome because all the questionnaires used in the study were validated questionnaires.

3. I am working on the genetics of fat disorders. This is taking way too much time but I have encountered many roadblocks along the way. As exciting as this is, the roadblocks have been groan-inspiring.

4. I am also working on a description of tissue from fat disorders on the cellular level and have found a pathologist who is interested in learning more and helping describe the small changes in the tissue. Why don’t we know more about the histology by now? Because in most cases, the tissue looks like normal fat (not the case for lipedema – Dr. Földi and others already published nice descriptions of lipedema). However, there are clues in the tissue that something is not right, and we are trying to capture those to give us hints as to what is going on in the rest of the body systemically.

5. Awareness of fat disorders is on the rise. I speak with many doctors taking care of patients with fat disorders and they are interested in learning more. Mystery Diagnosis just aired an episode on a young man with Dercum’s disease type III which has dramatically increased awareness amongst patients. A DVD of the program should be available soon on the FDRS website. I would like to clarify the look of the lipomas and the proposed mechanism shown on the show in a short YouTube video.

6. A medical doctor in Sweden is starting to do some research with the Swedish adipose dolorosa population. This is starting with questionnaires.

7. A new investigator may have an animal model for a fat disorder. More to come.

8. We will be writing grants soon with a focus on mechanisms underlying fat disorders.

Thank you for letting me work with all of you.

Best Regards,

Karen Herbst