Dercum’s Disease

Dercum’s Disease (adiposis dolorosa) is not only a debilitating painful disease, but often a frustrating one.  Patients often struggle to find reliable helpful resources about this disease for themselves, for their medical doctors, for their families, but also for disability and insurance claims.  One would think that a disease that’s been documented since the late 1800’s would be widely recognized, but sadly, it’s not the case.

Dercum’s Disease is characterized by painful multiple fatty growths (lipomas and/or angiolipomas) that can vary widely in size. Some growths may be as tiny as a rice grain while others can be quite large and disfiguring.  Contrary to some older literature, Dercum’s Disease does affect both men and women- but men currently account for a small fraction of those diagnosed.

This website will provide links and titles to medical articles, support groups, and related information about Dercum’s Disease and some associated disorders.  Links will be provided so that articles may be printed or cited as needed.

HINT: To best access all the information here, please click the Category headings.

NOTE:  This is an informational-only website;  always consult a medical professional for a diagnosis.

50 responses to “Dercum’s Disease

  1. Great Blog! Having all the links in one place is nice. The only thing missing is a Published Research category. Here are the links for published research for 2011 & 2012 if you wish to add this to your blog.
    Published Research 2011:
    *Liposuction May Reduce Pain in Dercum’s Disease (Adiposis Dolorosa)
    Emma Hansson MD, Henry Svensson MD, PhD, Håkan Brorson MD, PhD
    Article first published online: 11 APR 2011
    DOI: 10.1111/j.1526-4637.2011.01101.x
    (The results suggest that liposuction might alleviate pain in patients with Dercum’s disease. However, it is difficult to determine whether the effect is due to the actual surgery or to other factors)

    http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2011.01101.x/abstract

    —–
    *Thermal and vibratory thresholds after liposuction in patients with Dercum’s disease
    Emma Hansson, Henry Svensson, Ingmar Rosén & Håkan Brorson
    April 2011, Vol. 45, No. 2 , Pages 72-76 (doi:10.3109/2000656X.2011.561102)
    (There were only small differences in thermal and vibratory thresholds three and 12 months after liposuction compared with preoperatively, and none of these was statistically significant)

    http://www.ncbi.nlm.nih.gov/pubmed/21504276

    —–
    *Histology of adipose tissue inflammation in Dercum’s disease, obesity and normal weight controls: a case control study
    Emma Hansson, Henry Svensson, Unne Stenram and Håkan Brorson
    Journal of Inflammation 2011, 8:24 doi:10.1186/1476-9255-8-24
    Published: 28 September 2011
    (The findings suggest that there is an inflammatory response in the adipose tissue in DD. However, this response is not more pronounced than that in healthy obese controls. This contradicts inflammation as the aetiology of DD)

    http://www.journal-inflammation.com/content/8/1/24/abstract

    —–
    The following is not Dercum’s Disease research, but since some women with Dercums develop Lipedema I thought it might be of interest. The research does mention Dercums, but only in how it differs from Lipedema.
    *Tumescent liposuction in lipoedema yields good long-term results
    W. Schmeller, M. Hueppe, Meier-Vollrath
    Article first published online: 17 NOV 2011 DOI: 10.1111/j.1365-2133.2011.10566.x
    (Conclusions:Tumescent liposuction is a highly effective treatment for lipoedema with good morphological and functional long-term results)

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.2011.10566.x/full

    —–
    Published Research 2012:
    *Subcutaneous adipose tissue fatty acid desaturation in adults with and without rare adipose disorders
    Jennifer K Yee1, Susan A Phillips, Kambiz Allamehzadeh and Karen L Herbst
    Lipids in Health and Disease 2012, 11:19 doi:10.1186/1476-511X-11-19
    (The positive associations between the DIs and measures of adiposity (BMI and percent body fat) support increased desaturase activity in obesity. The lower vaccenic/stearic DI in DD SAT compared with Controls suggests presence of other factors involved in fat accumulation in addition to lifestyle. Other mechanisms driving fat accumulation in DD such as inflammation or lymphatic dysfunction should be investigated.)

    http://www.lipidworld.com/content/11/1/19/

  2. I didn’t read the entire blog, so I missed the published research posts.
    I only looked at the categories and didn’t see it listed (sorry, my goof).

  3. It is my understanding that you don’t “develop” Lipedema, but you are born with it. I have had it since birth and believe that I developed Dercum’s and did know what it was for most of my life.

  4. faithinangels

    There is no such thing as too much information. Knowledge is power! Love the site and blog.

  5. How to find Foundations that provide medical funds for people with Dercums. Funds to cover costs of CVAC, Whole Body Vibration Machines,
    Also for Major Autohemotherapy, has proved successful in Madelung’s Disease.

  6. Agnes Knudslien-Esih

    Awesome site Sue!!! Thank you for putting all of this together….it’s a great tool and there’s alot of info here…..really appreciate all the time and work you put into this…THANKS AGAIN!!!

  7. Sue, you have done a great service here for the entire Dercum’s/Fat Disorders community! Thank you! Thank you! Thank you! I’m sure it was no easy feat but you have certainly made it easier for everyone to find correct and current information. Awesome job!

  8. this is a great beginning Sue. I am so happy you have such talent.

  9. UGH! I just typed a really long message and it didn’t post. It to me to a page telling me there was a problem… and when I went back, my post was gone. I HATE it when that happens! LOL!!!

    This is a very educational and resourceful blog! Thank you so much for all your hard work and dedication!

    Blessings!

    Lori

    p.s. I’ll try to get the gumption to retype that message again later… so much thought into it, and my memory is awful! Basically I was asking if anyone knew of any specialists in Indiana or Ohio and talking about other “rare disorders” I have… to see if anyone else has them.

    • Thank you, Lori! Be sure to check out the ‘Confused? Where to Go for Support’ post here. There are many online Dercum’s Disease groups mentioned…if you can’t connect with anyone who knows of a doc in IN or OH, let me know and I can dig up some contacts for you.

  10. Sue, this site is awesome! Thank you so much for all your hard work, it is much appreciated.

  11. Hello-Sue!–I-just-learned-of-your-site-today.–I-have-much-reading-yet-to-do,-but-wanted-to-thank-you-for-all-your-hard-work-putting-all-this-info-in-one-place-and-in-a-easy-to-access-format!–I-know-this-will-help-so-many-Dercum’s-sufferers-who-are-so-needy-for-information-on-this-“not-widely-known”-disease.–It-is-also-nice-to-be-able-to-print-out-certain-articles-on-here-to-bring-to-the-numerous-Drs-who-need-to-be-informed-and-educated-about-fat-disorders.–Thank-you-again-for-your-ongoing-research-and-support!!!!

  12. Congratulations!! I am sure this vast collection of information will serve not only patients but also doctors. It should be made public in medical journals and magazines. I will certainly make it known to my support group! Thank you for your diligent work.
    Dercum’s Disease Deutschland (Germany), also for Switzerland and Austria, the only such group in these countries.

    http://imedo.de/group/overview/index/1702-dercum-s-disease-deutschland

  13. Excellent Sue! We needed this. thanks for taking the time and energy to put this all together!

  14. Hi – just wondering if anyone else out there is also concurrently on blood thinners (coumadin/lovenox) and has experienced some pain relief. Have you heard anything?

    • If you mean experiencing pain relief from DD as a result of taking a blood thinner…no, I have not heard anything like this at all. I also asked a few others about this possibility and everyone said the same …they haven’t heard of that happening. Has it happened to you?

  15. im in my 28-30th eastimated yr of dercums .just diognosed aug 16th i would like to know what u mean by type 1 type 2 or 3 dercums please .thanks for your time ,buggy

    • Here is some info taken from http://emedicine.medscape.com/article/1082083-clinical, Different types can be identified according to the spread of pain.

      Type I, or the juxta-articular type, with painful folds of fat on the inside of the knees and/or on the hips, in rare cases only evident in upper-arm fat
      Type II, or the diffuse, generalized type, where widespread pain from fatty tissue is found, apart from that of type I, also often in the dorsal upper-arm fat, in the axillary and gluteal fat, in the stomach wall, in dorsal fat folds, and on the soles of the feet
      Type III, or the lipomatosis, nodular type, with intense pain in and around multiple lipomas, sometimes in the absence of general obesity; lipomas are approximately 0.5-4 cm, soft, and attached to the surrounding tissue (Histologically, these are not always encapsulated. Some have been classified as angiolipomas.)

      I hope this helps!

  16. Need help

  17. after endless web research i think i have found my answer. lightbulbs go off every time i read about dd. does anyone know what type of doc and if there is one in new jersey or nyc manhattan. thank you!

  18. Angela Hatcher

    Thank you for this website! I was diagnosed yesterday after having these painful nodules all over me for about 3 years. I really appreciate the time you must have put in to finding all these resources.

  19. A very dear friend recently began suffering from so many symptoms of DD. It’s so hard to find a doctor that knows about this disease and to even get a definitive diagnosis. From the research done so far it seems to me that if you think you might have DD, you probably do. Are there any doctors that we could see in the New York area that have any experience in th treatment of DD? Thank you for your time and I’m sure your sharing of information is appreciated by all.

  20. Hi my name is Rachel and my Mum has dercums – I was looking for a doctor/ pain specialist in australia (queensland) hopefully that may be able to help her. Can anyone suggest a name please…

  21. Hi,
    I am also desperate for a Dr to either rule in OR out Dercums for me. Two different Dermatologists, that my Rheumatologist (for my RA) referred me to, said that it was “probable” and “more than likely” that I have it. However, as that as far as they took it, I stil
    dont really know for sure. And I guess I won’t be finding out anything more from them either, as the first one said she would call me in a week after she had some time to do some research. But it’s been 3 months and she isn’t even returning my calls. The second one, who also didn’t do any kind labs, biopsies or imaging, but told me I probably had it, said there was no reason to come back to him again, since there was no way to be sure anyway and that I should see my Pain Dr (who can’t do anything further for me without a DX from someone else) about it. So I’m at my wits end about how to proceed from here (as is my PCP and Rheumatologist). I have placed calls to various Endcrinologists, Neurologiists and more Dermatologists as well, but so far anyway, none have heard of it and are not interested in seeing me about it. In the last three months since I’ve first even heard the term myself, I have done a lot of research on my own, and unfortunately, it does seem like a very accurate description of what I’ve been experiencing – but I could be way off base for all I know…Anyway, very sorry for all the rambling. I just feel like if I could have a more definitive answer about what’s going on with my health, I could at least get started on trying to “deal” and manage it as best as possible. I’m located in the Staunton, VA area (near UVA where I saw the first Dr). Any help or guidance would be much appreciated, to say the least.
    Regards,
    Melanie

  22. Sue Grimshaw, Thanks again so much for the wonderfully speedy and informative email you sent me regarding my above comment. I will defintely be jumping on these opportunities right away! I’m in awe, by the way, of what you are doing here. So much so, that if I ever get my health together enough, would love to volunteer my help in whatever capacity might be needed – whether or not it’s even Dercums that I end up having.

    Suzi More, Wow! Thank you too! Travel to New York, for a good Dr, is a definite possibility – if nothing closer to me pans out soon… I have contacted Dr Herbst office in AZ and would LOVE to be able to see her, but the travel costs on top of the medical expenses is just too much for me right now. Plus, I just really feel like there must be a way, more locally, to at least rule out, if nothing else, other possibilities before making that big of an investment.

    To Both of You (as well as others I’ve “met” just this last few months while trying to get this figured out): I have to say I am absolutely overwhelmed by the Dercum’s community that I have encountered so far – and apparently I am only just beginning to get to know it, as I haven’t even been on Facebook etc., yet…So if I really do have to end up dealing with this disease, I think i am really lucking out, as far as the people anyway, which goes a long way with me (especially since already being a “veteran” of the autoimmune world, I’m well aware that it isn’t necessarily always like this)….
    Regards,
    Melanie

  23. Hello, I’m a 45yr old woman in Ireland and I have been diagnosed with Dercums. I cant find a doctor to treat me here and wondered if anyone knows a specialist in UK maybe? Many thanks SJ

  24. Sue, this is Eric. You have been a great resource in my journey thus far. I cannot speak for all Dercum’s Sufferers, but have uncovered a substantial amount of inofrmation that I feel Gulf War Era Veterans suffering with DD need to look at. I will provide one link and if there are any Vets out there that can identify with this, you can continue to provide them my information. Take Care, God Bless and Merry Christmas.

    http://www.iom.edu/Reports/2013/Gulf-War-and-HealthTreatment-for-Chronic-Multisymptom-Illness.aspx

  25. I am looking for a dr in the wisconsin area that is familiar with DD. I will be having my 6th surgery in 4 years to remove some rather large and VERY painful lipomas. I have been diagnosed with Fibromyalgia and can’t get anyone to look any further than that. I am soo very frustrated. I know I have DD, I just need to find a dr that will help me. Any referrals are most appreciated. The last mass the dr removed was the size of a grapefruit from my lower back. I am in so much pain it is hard to do much of anything at times.

  26. Hi I live in New York are there any doctors who can diagnose dercums disease

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