My Mom just forwarded me a rather exciting email from a Dercum’s email support group she’s involved with. Apparently a small newspaper in Chicago published a little something about the disease and happened to mention my website!
The article is a regular feature of The Beacon News, a local suburban Chicago newspaper which is part of the Chicago Sun-Times News Group, and it’s written by Dr. Peter Gott. Apparently Dr. Gott writes a regular column wherein readers write to him with questions relating to medicine, healthcare, and so on. In the December 29, 2008 paper, Dr. Gott published a letter from a Chicago woman who had just been diagnosed with Dercum’s Disease but was at a loss about what to do next or who to turn to. Thankfully, Dr. Gott did his research! And in so doing, he came across my site, The Dercum Society. He even linked to us! As far as I can remember, this is the very first time The Dercum Society has been referenced in a regular newspaper, so that’s always exciting!
Dr. Gott also referenced Dr. Karen Herbst, an endocrinologist in San Diego who has been researching the disease recently, and has also been kind enough to assist with my case evaluation and treatment plans. I can only hope that the woman who sent in that letter is able to find some help now! Well, Miss, if you happen to see this blog entry or if you make your way to my site, feel free to email me! I’m always happy to do whatever I can to help out. And of course, I’m pretty much convinced now that Dr. Herbst is the nicest doctor on the planet – alongside my pain doctor, of course – so I’m sure she’d be happy to help you too. 🙂
If there’s anybody else out there who’s looking for information, help, or support with regard to Dercum’s Disease, please check out the Dercum Society at www.DercumSociety.com or www.DercumsDisease.com. My email information is there, so feel free to email me with any questions!
Oh, and Happy New Year, everybody! 🙂
I, too, read Dr. Gott’s medical newspaper response about Dercum’s disease. It appeared 12-29-08. I was respectfully impressed with the research he did and simple, understandable language used. The woman who wrote with the questions is “married to a physician” according to her letter so it helped open the eyes to that professional community, too. I was surprised when it was mentioned that researchers in Sweden actively research and treat the disease.
Many congrats on having your web site cited!
Wow! That is awesome! I used to read Dr. Gott in my local paper until we stopped getting it delivered. 🙁
I’m seeing an endo too (although, not in S.D.) and didn’t realize your health problem was endocrine related. We should talk shop one day- only, I know mine will pale in comparison to what I’ve read about your health trials….)
Hello fello dercum survivor, I belong to the group also I just had 20 lipomas removed from my inner thigh and have been hoping this will give me relief for a while. It is great to find different sites about the disease, where it is not well known.I know my doctors know about the disease by now. I just wish we could find better treatments but with the help of each other and Dr. Herbst hopefully that will happen. thank your mother for the article from Dr. Gott and you for posting it. the more we spread the information we have regarding our rare disease the more we are aware. Febuary 28th is rare disease day for NORD(national organization of rare diease). I would like to see if the local newspaper will do an article about the disease with myself and my doctor, maybe if we can have all the members do the same on febuary 28th more people will know about the disease; it is a start. Well it is nice meeting you and good luck on the quest to make others aware of this lonely painful disease! E