DD patients who died from DD


Pam could you please give us the info as the where you found
this info? “There have been case histories and autopsies that found lipomas in the heart, lungs and brain. Are you sorry you asked?” I would like to read about specific people who died from DD. Knowledge is always a good thing. I am never sorry I asked a question. Have you ever heard of or from a DD sufferer who was dying from DD? I have also read that some die from pulmonary disease. I wonder how that works? Maybe I can find out who wrote that and ask them if I can find an email address. Keep fighting the good fight! Thanks and Hugs, Grandma Sylvia


Hi Sylvia!
I have read it too some where. There is info of Russian autotopsy repport. Does anybody read Russian?

I’ll go and look for the info too
BUT I have met DD sufferes that are over 80 and moving :slight_smile:
so I has to be luck or induvidual variations and other diseases.

It seem to hold on even if fibromyalgy patients can get better
when they get older. DD patients get tired and get lot of other problems and isolate…
This what I have seen this long…

Careplace and other sites like this have a very important



Hi Sylvia,

Unfortunately, I learned all this from multiple groups I have belonged to for several years. I saw some pictures in the files of one of them, I think, and some of it I just found while searching the web. I was very new to computers then and didn’t know how to save the information. You recently joined a group that has some very interesting info in it’s files and picture section. I don’t think the owners here would appreciate my mentioning that group by name, but you can write me off group if you aren’t sure what I mean.

Hugs and spoons,


Thanks Pam…I will try to find the energy to research this further. I am just wondering as, like you, I see references to people who have died from DD and I wonder how that happens. As I am 62 I think I am one of the oldest members on this site and others. If DD does not get me, the diabetes probably will. I am just trying to find out what I can in the hope of helping the younger members. I know you spend a lot of time trying to help others who have DD. You were the first one to help me when I first was diagnosed and found Careplace. I am sorry you are feeling ill also and hope it lets up soon. Hugs, Grandma Sylvia


Thanks so much Arieldiva…you make me feel better whenever I hear from you. I am glad to hear that some people in Sweden with DD have lived a normal life span. I learned to transliterate Russian when I worked in a Slavic Library but I can’t translate. I was just wondering if DD is the actual cause of death or how it causes the pulmonary problems that are the cause of death… according to some research articles. Should I be concerned that I now need oxygen supplementation in addition to my CPAP? I wonder if the DD could be causing my low oxygen…Yes, I am up again in the middle of the night. Sleepless in the USA…Grandma Sylvia


Oh dear… I read that in the other thread (about death) and freaked out! I have been searching for about 30 mintues and cannot find anything about death being caused by DD directly. If anyone does find anything online, I would love to know. I have two that I can feel in my upper right abdomin and my last doctor told me I have a tumor in my liver (after a CT scan)… he just casually mentioned I had a tumor there and not to worry because it is probably benign… PROBABLY??? I am going to find a new doc after I see the specialist I have lined up for this week.

If anyone finds anything about death or autopsies showing DD as cause of death, please share.


Hi Sylvia,

It is extremely rare to die of DD, but it can happen. Usually it is from involvement of the heart. If I ever get some free time, I will help you research. I do know of older members than you. One member on my group is older and her forebears who had DD also lived into their 80s.



Hi Pam…When I had a recent ultrasound of my heart…they had trouble finding an area where they did not run into the lipomas. Since that is close to the ribs you can really feel them. My rib cage was one of the first places they grew. I have done nothing but type today so have to go! Thanks again, Hugs, Grandma Sylvia


I asked Dr Herbst a while ago about deaths from DD and she told me that she has no records of anyone dying from DD…Other causes but there is no record of anyone dying from the Dercums…So I hope that helps some of ya’ll…It helped me a lot when Dr Herbst told me that…


Hi Suri,

Don’t freak out! Deaths from DD are extremely rare. I worry more about dying from an allergic reaction to a bee sting or something else equally stupid, lol.

Hugs and spoons,


That’s good to know, Elaine. Thanks.

Hugs and spoons,


Yeah, Sylvia, my ribcage is completely cover with them too. No spaces in between, either. My heart is still fine though, and I’m not worried about that.

Hugs and spoons,


It’s good to know I will not die from DD! The pulmonary problems still worry me… but then again you just never know… A few years ago my brother in law was killed in a car accident. He was worried about his health (history of heart problems)… and then POOF none of it really matters. I guess it is good to be on top of things and try to take good care of myself, but not let it freak me out with worry. (easier said than done sometimes though!)


I need to ask…

when you say tumors on your rib cage… you mean on top of the bone, right? Like, skin, fat, tumor, muscles, ribs… right? or… skin, fat, muscles, tumors, ribs?

Or… :frowning: skin, fat, muscle, ribs, tumors?

I’m still not sure where my tumors grow…

The biopsy report doesn’t say anything other than

“angiolipoma removed from abdominal wall”

can my tumors grow UNDER and INSIDE?? I mean, deeper than normal fat deposits (which are generally in the first few layers of flesh- NOT beyond the muscle wall)

I was under the impression that the tumors are only in the ‘flesh’?

The first doctor I had filled my head with loads of garbage… and no, he didn’t even know what a lipoma was, let alone Dercums.

Should I get MRIs every year? I read somewhere I should, but never saw it again… and the last time I saw a doctor, he said we would do whatever I want to do to feel better about this… but now I got no insurance, and that was over a year ago (closer to 2 years).

(am I stepping on toes or being bad somehow by talking so much everywhere?)


Well, the darn things can grow just about anywhere. I have some that grown sideways in long tubes in between my ribs on top of the muscle. It kind of feels like they are attached to the muscle. I also have them internally. I know that I have them attached to my kidney and spleen. I also have them in between my rib cage and liver. I pretty much have them from my neck to my knees.

I don’t get mri’s every year… I don’t think there is much they can do anyways. I do suggest that we find you a doc so you can get a dx. Have you heard about Dr. Herbst yet?


Generally the lipomas form in the fat layer so, yes, on top of the bone. They can also form internally and sometimes on organs. Imaging usually doesn’t show the lipomas since they are, after all, just fat and those machines are made to look through the skin and fat. Once in a while one will show up as a white shadow, but they have to know what they are looking for.I don’t want to frighten you, but these things can form just about anywhere. Fortunately, they usually stay near the surface.



Me too, except it’s scalp to soles of feet.