Dercum's Disease Support Group

Has anyone found much out about variability in DD progression, especially with Males? I see about a dozen or so afflicted guys on MDJunction.com and most seem to be more heavily afflicted.

Dr. Herbst did a big study about 5 years ago of members from an online DD forum and it appeared that the average # of lipomas was about 77 with an average disease duration of 14 years or so (from memory).. Males represented 17% of the study participants.

http://lipomendercum.nl/ Adiposis_Dolorosa_Is_More_Than_Painful_Fat_-_Dec_2007.pdf

Now, in my opinion (and experience from dealing with cancer in the past) any online forum populated with disease sufferers will be overweight with people on the more severe side of affliction. (i.e. the person with 10 mildly painful lipomas for 20 years is much less likely to be looking for treatments online.)

I would imagine that there are quite a few people with less severe afflictions than the study actually reflects.

As the study pointed out that roughly 25% of those with DD polled had family members with painful lipomas.

So, I guess my question is did any of you have male family members with undiagnosed "DD"? What was their quality of life and for how long?

There is so little information on the disease progression out there. Mildly afflicted cases probably never reported or diagnosed (more potentially in men?). Is this logical reasoning?

"There has been little research conducted on the natural history of Dercum’s disease, but case reports have suggested that the pain might be aggravated over time [18]. However, this is not clearly supported in a recent study with a five year follow-up. In that study, the average pain was relatively constant over five years (about 5/10 on a visual analogue scale). On an individual level some patients experienced less pain after five years and some more [70]." Source: http://www.ojrd.com/content/pdf/1750-1172-7-23.pdf

I know that isn't any help, but that is the latest news about Dercums Disease as of April 2012... we just don't know.

Dear friends! I just want to draw your attention to this so called researc done by some plastic surgeons! They are not doing this to help us as I understand after reading this!!!!! It is just a refined way of putting us down and make us more miserable than we already are. We must beware of this attempt to bully all of us!!!! One sentence classifies this so called research and shows us the hidden meaning of it all "....they often have emotional disorders and difficulties in doctor-patient relationship." As if this is our fault!!!! Shame on them for publishing this!!! I do wonder what Dr. Herbst have to say about all this? Maybe she knows something about the backgroun of all this if she talked to Dr. Fagher the famous Dr. in Sweden who worked with one of these plastic surgeons befor but stopped for some reasons. All they have done is discrediting us and try to create doubts about our terrible disease. They even say that we have to bee obese to fullfill the criterias!?! Our worse enemy couldn´t have done this better!We do have to be critical and don´t swollow anything they serve us. The huge problem now is to stop this crap from being used against us and I don´t really see how. Please contact Dr. Herbst and ask for her opinion! Warm and soft hugs, Annette

Brave,

Yes, you are right about the plastic surgeon. Too bad we can't stop them from publishing some of the negative things that are printed and are not true. This Dr. seems to be one who doesn't know anyone with DD. He surely would think differently if it was one of his children or his wife who had DD. After all, he is a plastic surgeon, and who knows, he may have had a bad experience with a patient who had DD? Could it be that he emoved the lumps from a DD patient only to have the lumps quickly grow back? I know first hand that returning lumps are very disapointing for the patient and my surgeon I had was shocked also on my follow-up visit to feel new lumps where the surgery was just done. My surgeon first tried to say it was just scar tissue, but I returned at a later date and showed them they really were new lumps. Most surgeons have NEVER seen this happen before, and most are unbelieving that it is possible. That is why I made it a point to go back to that surgeon months later to show them the new lumps, and how I now have several where the one was removed.

There is so much out there that is written and just is not true. Another one I have read says that the hands, face and head are spared from developing lumps in DD. Well, I have a lump starting on my forehead, another just in front of the occipital bone over my eye, and I have 2 on my hands. I know several people posting on this site have mentioned the lumps on their heads and scalp. So that shoots that written statement to heck.

Most of these studies are using a small portion of people in the study since it is a "rare" disease and it is hard to find participants with the "rare" disease. So of the small portion they are using, they may not have anyone with the lumps on the scalp, face or hands. So they wrote that the lumps don't grow on the head, face or hands. However, they are only looking a small portion of the people with the disease. They are "assuming" that the small portion of people they are looking at are the "standard" for the disease they are studying. It simply is not true. You need to look at several hundreds of people with a disease to set a good standard.

Celeste.

Well said!

Yes, I agree Celeste. I also have two in my hands, had one removed in my neck and as a very young child had "something" benign removed from just below the eyebrow that the doctor said could impair my future vision if not removed. There is just not enough data for doctors to really know what is happening in the wonderful world of DD.

Interesting information on a review of the variable expressiveness of a postulated Dercum's gene. A review of degree of afflication between family members (3 generations);

http://www.medicinedocshare.com/html/ 2_html_heredity_factors_in_Adiposis_Dolorosa__dercums_s_dise ase__4294.html

http://www.medicinedocshare.com/html/ 2_Swf_Hereditary_Factors_in_Adiposis_Dolorosa__Dercum_s_Dise ase__4294.html

Peeps..you know that when our sweet Annette is upset we are all upset. She is in the heart of the whirlwind in Sweden so far away it is hard to help her. At least she can come here and let us know what is going on in Sweden! I had long known that Sweden is the only country I know of that is doing research on DD..maybe a little in other countries. My grandparents came from Sweden and I am pretty sure my grandmother had DD..but of course they did not know what it was back then..or now for that matter! Most people who have it here in the US are not Swedish so it is a mystery. From recent events it shows that DD patients have just as hard a time in Sweden as they do here.. getting doctors to quit saying that we are just fat, lazy and nuts. We are all sick of hearing that and we will insist that our doctors do not continue to insult us..then maybe they can get around to helping us. I know we have many wonderful doctors here and I go to several of them. Anyway..Annette will do her part to let us know when Swedish research that may not be accurate reaches us. Thanks for the heads up sweet Annette.. I bet you need one of your soft hugs back this time so I am sending you a special one. Soft hugs, Grandma Sylvia

I cannot agree more with Annette. Thank you for supporting her comments. I know I do!

OK back to one of my original questions on this thread.

As the study pointed out that roughly 25% of those with DD polled had family members with painful lipomas.

So, I guess my question is did any of you have male family members with undiagnosed "DD"? What was their quality of life and for how long?