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.

75 responses to “Dercum’s Disease

  1. pastagarden

    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).

    • No problem! In fact, I may just go ahead and add more categories to make posts easier to find!

  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.

    • Thanks for your comment! I will work on my wording there because the onset of Lipedema may occur at different points in time for different people…for example: peri-menopause, pregnancy, etc. This article (http://www.hanse-klinik.com/englisch/Lipoedema.pdf) states that “In 100 of the
      patients assessed in recent years, disease onset occurred between the ages
      of 30 and 40″.

  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. Carole Reed

    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

    • Thank you, Carina! I will add the link of your support group to this website as well. Thanks again for all YOU do:)

  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

    • Melanie,

      I will email you directly with some information and doctor suggestions. Hang in there!

      Sue

      • Sue,
        I am also living in VA (Richmond area) and would love to have names of doctors in the area that would recognize if this is what I have or not and that would be of some help. No one knows what my painful lumps in my legs, groin, buttocks, and hips could be. Some doctors think they are lypomas whole others do not. They don’t see them on the ultra sound that was done to rule out vascular issues. I’m very frustrated and would appreciate any help you can give. Thanks for all the work you’ve put together here. It’s a great resource and must have been a labor of love.
        Deb

      • I’ve emailed you a lengthy reply with lots of information!

    • can you travel to see Herbst in Arizona or my doctor in NYC?
      Suzi More

  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

    • Melanie, Dr. Hendricks Whitman is in NYC at Hospital for Special Surgeries. He diagnosed me after learning about Dercums from Dr Herbst’s articles and many others. But he respects her work and that is very important for me. He is going on a lot of vacations right now, (he takes his wife on trips for the holidays) but then he is in the office for months at a time. He also thinks that I may have MCAD and did research to try to find people in NYC who would help me. We found two different doctors that would treat me but only if I had diagnosis from a doctor in Boston and Dr. Afrin, now in Minneapolis. I will see Afrin in January and then hopefully see one of the two doctors in NYC. Whitman will go out of his way to help a patient, that is what I like about him.

  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.

    • I sent you an email with some info in it!

    • Rebecca, Any luck in the Wisconsin area? I have gone through some very metadata heavy searches, and found a few Dr. around the Milwaukee area. I am working on a couple of other angles for awareness in the Kenosha area. Sue helped me get connected with Dr. Herbst and now it’s a matter of following someone that will help follow through with details.

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

  27. Sue Sutherland

    Do you have any information about specialists in treatments in London or Toronto, Ontario?

  28. lynn stafford

    I have been trying to get a Dr to tell me what I have for 6 yrs I also have RA and my RA Dr has been blowing me off last week I went to a derma. and he told me I have DD and I still don’t know much about it but I have a lot of symptoms Now I need a Dr in NM I don’t think I can trust my RA Dr please can someone help thanks

  29. Due to a lack of interest/knowledge by my doctors, about symptoms I have, I am researching possible causes for the multitudes of pea & grape size subcutaneous “balls” throughout much of my body. The number of which is rapidly (in my opinion) increasing. Can anyone tell me of a good practitioner in the Richmond VA area who is familiar with Dercums Disease or other Adipose Tissue Disorders? I think that may possibly be my problem. I’m willing to travel some if I have to if there’s no one good in my area. I am desperate to get some answers. I feel as if my body is under attack. I appreciate any help that’s available.
    Deb

  30. hi i live in ny and i need a dr to dx if a have dercums of not help

    • I have emailed you!

      • Susan,
        Linda Green Marone has been to my Rheumatologist at Hospital for Special Surgeries and even took another friend with Dercums. I think she may have something to say in addition to my words about this doctor. His name is Dr. Hendricks Whitman and I think I gave you his address and phone number before. I have been with him many years and he gave me the diagnosis of Dercums after my researching and finding the Herbst articles. After that, he has read everything I have given to him and he has taken many of Dr. Herbst’s suggestions for my care. He has also read dozens of articles on RADs and he is a very compassionate and caring doctor. If he were to see Janine, he might be able to diagnose her and that would be a start. Also, there is another Rheumatologist who I have seen in NJ at Newark Beth Israel, named Dr. Robert Lahita, who says he became more knowledgeable about Dercums through his work with me and the dozens of articles I have given him. His real specialty is Lupus and he has written many books on Autoimmune diseases. Lastly, Dr. Momeni in NJ, is my plastic surgeon. He was visited by a Dercums patient but they didn’t realize he was only a plastic surgeon. He has read many articles and seen the Dercums videos that I gave him which have helped him understand what kind of pain I suffer from the lipomas but he is only a surgeon and he felt bad that the patients came as far as they did thinking he was a primary. Because my primary is more concerned with my diabetes, my success has been to seek out the Rheumatologists but having an understanding plastic surgeon who will get me in as quickly as possible for surgery when I have a new lipoma pressing on my spine has really had it’s benefits. There have been very bad times when I have hardly been able to stand up because of this.

  31. I live in Kentucky. Are there any doctors here to diagnose dercum’s disease? Also, does any insurance approve liposuction for this disease?

    • Hi – I also live in KY, have you found any doctors able to diagnose this condition?

      • cprentice1208

        Hello,
        I am not at all sure about a doctor who is currently diagnosing DD in Kentucky. But if somebody knows of one, I would love to hear about it so that I can add the name to a list of doctors willing to take the risk of actually diagnosing…..
        Cynthia

  32. Hi I’m looking for a doctor in New York who is familiar with this disease please help.

  33. Hi! I found your blog immensely helpful! I had a few additional questions and sent you an email. If you have time to reply it would be greatly appreciated!

  34. Hi! So I am not alone! Thanks so much for your blog. I am in Sydney and am pretty sure I have dercums disease, painful burning lipomas along tendons, breathlessness, fatigue, weight gain. Do you happen to know of any Australian doctors? Also, do you know if DD relates in any way to dysautonomia or mast cell activation disease? Thanks so much, Kate.

    • Hello,
      I am Cynthia – the other Admin from the page. I was interested in your question about MCAD and wondered whether you have actualy been diagnosed with it? As for the rest, most people with DD have muscle problems which might well be caused by some form of Dysautomnomia but there is no research on that as far as I am aware. There are many of us who do have Neuropathy hitting much of the body – so where does one disease start and another finish? Have you had any tests done for MCAD?

      As for Australia there are lots of people diagnosed in Australia already and others who are striving to get a diagnosis. DO ou have a Facebook account? If so then you can find a couple of DD groups especially for DD patients one of them is called Dercum’s Disease Connect Australia. I do not have any doctors names for Australia but perhaps if you ask on the site, you might find some help in your area.
      Kind regards, Cynthia

  35. Kelly Lynne

    I am hoping you might be able to direct me to a doctor in NM who can differentiate between fibromyalgia and DD. My fibro dx 16 yrs ago never addressed to hundreds of painful lumps that were my initial issue and standard fibro treatments don’t work. Thanks much for your time and attention.

    • cprentice1208

      Hello Kelly,
      I am sending you a personal email with some information which might be of interest to you. Just as a matter of interest for others who might be reading, there are very many of us who were diagnosed with Fibromyalgia and continue to be diagnosed as such at the same time as Dercum’s Disease!

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