I noticed that a lot of the research on Dercum’s is done in Sweden. My grandparents came from Sweden. I have had it for 40 years, diagnosed last month.
Hello all,
The fact that there is a dense cluster of DD sufferers in Lund, South Sweden, suggests that there is a genetic link. My grandmother’s antecedents were from that area. I don’t know if she had DD, unfortunately, I have DD. j
I just wonder, “Why me?” I have no relatives with this diagnosis nor the strange symptoms I live with daily. It just seems like it popped up from nowhere for me.
Hi all,
My Grandmother came from Sweden when she was a little girl. I don’t know from what area but she is my mom’s mom. Weird?
Well I know my grandfather had DD too and he was 100 percent Italian.As far as I know I have no Swedish ancestors but Scottish,Dutch,Itallian and German…I just think more listening to patients is done in Sweden then anywhere else- after all arent most people having a hard time finding Drs who know anything or will even listen???
Hi,
I live in southern Sweden quite near Lund (so near, in fact, I gave birth to my son there) where the research was done at the university hospital. It’s noted that the area I live in is a dense cluster of Dercum’s sufferers.
I am American just moved to Sweden 6½ years ago and I am not of Swedish decent. I just came down with Dercum’s symptoms four years ago when I became pregnant with my second child and was diagnosed a little over a year ago.
I can’t find any Swedish ancestors but you just never know.? I can imagine it’s possible for someone way back somewhere to have some Swedish blood and perhaps the genetic trait came from there but just never showed up enough to wonder what it was.
Joan
It’s difficult to find help here also. Even when presented with the Swedish research, they’re hestitant. Disability here is just awful, too. They came up with that I was less than 25% disabled without even having one of their doctors see me and it’s more I live my life at 25% to 50% of normal. Oh, well, have to keep going no matter.
“Northern European” is how much of the literature describes the ancestry of most DD sufferers. Fits my ancestry to a T.
Northern Germany, Denmark (desceded from Danish warrior kings, I am! (9th century or so,so my chance at developing a “royal wave,” is pretty slim!) Even some Scottish, and then later, American Indian.
But certainly, for me the genetic profile fits.
me
Wow This is very interesting. You only trace lineage through the mother as we can never be sure of the fathers! My grandparents came from Horn. I’m not sure what area of Sweden that is. I have many relatives in Sweden and I communicate with one. It took a long time for my diagnosis. The doctor in Columbus, Ohio who diagnosed me specializes in fibromyalgia patients. It was so great to hear from others with this disorder. I want to learn as much as possible and push for research here in the US. My husband is very supportive or I don’t know what I would do. We just celebrated our 41st anniversary and he has watched as my health declined. I would love to continue this conversation. I had never communicated on the internet before but I really need to talk with others who have this condition as most people have no idea of the pain we live with. I continue to do all that is expected from my children and grandchildren and fulfill my duties as grandma but they do not realize how much effort is involved. I just retired two years ago. I would sit at my desk barely controlling tears from the pain and just keep typing. Is this disease as rare as they say or just not diagnosed? I have fatty tumors over all my body and they increase daily. Each one is painful to touch. They are the worst over my hips and tailbone, around my ribcage and up and down my legs. They grow in bands. I also have Sjogrens, irritable bowel, migrains and diabetis type 2. I take 4 shots a day. The rheumatologist just started my on Neurontin and it is making me sleepy so I am sleeping a little better. I would love to hear all of your symptoms to compare. Thanks so much for your responses. I think it is very interesting that so many of you have some Swedish blood. I am one of seven and the only one with Dercums.
Hi Sylvia,
I think DD is not as rare as it is rarely diagnosed! I am mostly Scottish and Irish with a little French, I think, but who knows? My father’s side has been traced, but not my mom’s, and I know that’s where mine came from because she had tumors removed all the time.
I would like to have the name of the doctor in Columbus who diagnosed you for my sister. I have a firm diagnosis, but she does not, and she lives in Ohio. If you feel more comfortable not putting his name on the site, just email it to me at ozziespamela@yahoo.com.
Thanks,
Pamela
I am a grandma too…I know what its like to have to keep on being grandma under the same conditions you have…I have just recently been diagnosed but have had synptoms for years just never knew what it was…I thought it was arthritis.The grandfather I mentioned earlier ( my mothers father) has a form of DD but all they ever did was keep removing the lumps…My mothers sister (1 of 7 also) has DD but she just deals with it…I have it worst of all and am experiencing much of what you describe. Although I dont know of any Swedish ancestery I wondered the same thing about people from Sweden too…But there are any that are not Swedish that have ot too… I have found this site to be nore than helpful and supportive…You can add me as a friend and should you need a ear to listen …email me…
Lots of Dercum’s Sweds ut there! Maybe this stem cell research could help us eventually. If our fat cells are bigger than normal as I have read…they could inject normal fat cells and they could replace our big ones??? I think they can get stem cells from the umbilical cords of newborns now?? My grandma from Sweden never wore a bra. I take mine off as soon as I get home…they kill the lumps on my rib cage…same as the rest of you. What came first the lumps or the weight gain? In my case I was small before I got this and have gained 100 pounds. I weighed 105 when I got married at 21 and the lumps started soon afterward.
Wow …I too lost alot of weight (went from a size 22 to a size 16)…I actually started getting synptoms whe I started going into menopause 8 years ago…as menopause progressed so did the diease symptoms…
I’ve had a weight problem for the past 20 years, but had managed to lose quite a bit of weight before becoming pregnant the last time. I gained 37 lbs. during the pregnancy even while having all the terrible DD symptoms. After six months I only lost 20 lbs. after very dedicated eating on plan and then suddenly, I shot up 50 lbs. I’ve been struggling for over three years to get that 50 lbs. off and trying to get into virgin terroritory. So to make a long story short, the fat came first, then symptoms and bumps, and more fat really fast.
Presby2:
Your heritage and mine are exactly alike except I have Irish thrown in there too. My mom’s family is Irish and Native American. My dad’s family is Scottish, Dutch, German.
The myoclonus came first by 1 1/2 yrs and I was a size 7, nodules started forming in forearms and upper arms and lower legs all at the same time, then I gained tons of wt no matter what I ate or even if I starved. So here I am now with new one still forming years later. Literallly the only place on my body that I don’t have them is the back of my thighs but I have them in buttocks, tailbone, spine, ribs, abdomen, even my private area and I have a “nodular vagina” and so about 5 yrs after they first came up I now wear a size 20 (mainly because I have to keep everything loose, I can pull my pants off without unzipping or unbuttoning them).
Can’t imagine what I’m going to look like in the next few years since it just keeps growing new fat tissue and I’ve gained more than 100 lbs.
Just don’t care about the little things and keep going,
Benita
My father’s parents were the Swedes. My mother’s mother was a full-blooded Native American. I attribute the diabetes to her as she was blind and crippled from it. As you probably know Native American’s have a very high rate of diabetes. So. I’ll credit the Dercum’s to my father and the diabetes to my mom. That way I don’t have to blame myself for anything! Your lumps sound just like mine. The worst ones are the ones where I sit and each side of my tailbone. It hurts to sit. I could not sit at the computer anymore until my son got me this laptop and a table that scoots over my rocker. I use a massager in the chair off and on all day and several pillows. It still hurts. I never talked to anyone over the internet until now as it hurt to sit at the computer. I sat in that position for 24 years straight at work. I have big lumps on the back of my neck, which kills me and charley-horses in my neck if I excert myself. The lumps in my hips and feet make walking a nightmare. The bands surround my joints and you can feel them going down my legs. My husband can feel them all over my back. Each one hurts like crazy as you know. I have tiny ones all over and some as large as ping-pong balls. If you press on any it hurts. It hurts if I am touched anywhere as you know. I am not getting anything done around the house as I am so interested in communicating with others with this disease for the first time. When the computer went down last night, I thought I had done something and was so frustrated at not being able to respond to my messages!
In response to the question wt gain vs. tumors, which came first. In my case the tumors came up first and then I gained 100 lbs.
Benita