Dercum's Disease, Aka Adiposis Dolorosa

Anyone ever heard of Dercum's Disease or Adiposis Dolorosa? My cousin is working with her surgeon who BELIEVES this is the correct diagnosis, but I can't find any good info. Maybe someone here has heard of it before and might have some advice?


Thanks,


--Mike


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Comments

  • Is your cousin of German decent?


  • Circumstances prevent us from knowing her ancestry, but 23andme will soon help with that. Is Dercum's more common with German ancestry?


  • Yes.  It is exclusive to people with German ancestry because it is a genetic disorder.


  • Please reference the material from the expert, Dr. Karen Herbst, one of the only researchers on this topic:  http://www.lipomadoc.org, including a very concise white paper at http://www.lipomadoc.org/uploads/5/0/4/8/5048532/dd_white_paper.pdf


     


    This disease is not necessarily exclusive to those of German descent, but those of Northern European descent seem most affected, including a high percentage of Nordic/Swedish ancestry.


     


    This condition has not been determined to be of genetic origin, although it is certainly possible, and that possibility is being investigated by Dr. Herbst and others.


     


    I am not a physician, but my husband has been diagnosed with this condition and I have collected a lot of research on the topic for our own use - including our first exposure to Dr. Herbst on a Discovery Health TV show called Mystery Diagnosis, "The Man with 100 Lumps" https://youtu.be/_tfzk2-Gwyg


     


    Interestingly enough, Dr. Herbst expressed her disappointment with the end product of this TV show because the producers took pretty liberal artistic license in the appearance of the "lumps" to make them much more visible for the TV show.  Many/most lipomas cannot necessarily be seen, but can be felt directly under the skin surface.  The subcutaneous version is not the only location as they can effect internal organs as well.


     


    I hope these references can point you in the right direction for a diagnosis; unfortunately, there is no "cure", just symptom management and research.


     


     


     


  • dazdaz today is a good day ✭✭✭
    edited April 2016
    perhaps Jason was thinking of Germanic (rather than German), which would fit with Northern European.


    iirc, Germanic info is included in the 23andme reports

    fake it till you make it

  • CRISPR will begin treating people with genetic disorders in 2017.  It's only a matter of time before they cure Dercum's.  I would hold off on the surgery.


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