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-   -   Very rare disease or disorder (Any info?) (https://www.askmehelpdesk.com/showthread.php?t=99961)

  • Jun 9, 2007, 05:11 PM
    JoeCanada76
    Very rare disease or disorder (Any info?)
    There was a family member that was diagnosed with Dercum disease,

    Also known as Adiposis Dolorasa



    Dercum disease

    Anders' syndrome

    Dercum-Vitaut syndrome






    Does anybody have any information on this.

    Thank you in advance,

    Joe
  • Jun 9, 2007, 05:27 PM
    RubyPitbull
    Hello Joe my dear. Have you tried a Google search? I found a number of hits on it.

    Dercum's Disease - aka Adiposis Dolorosa
    Dercum's disease or syndrome (www.whonamedit.com)
    genome.gov | Learning About Dercum Disease
    Emerging Worlds: Chronic Illness and Viral Infections
    Dercum's Disease - From a patient
    NORD - National Organization for Rare Disorders, Inc.
  • Jun 9, 2007, 05:40 PM
    JoeCanada76
    I will need to pass on this information. I was also wondering if anybody has actually heard of it before. I appreciate your answer, I have googled it. Thank you Ruby for the help. I was at a loss for a while there. Just trying to find more info about it but it looks like not many people know about it.

    Joe
  • Jun 9, 2007, 05:51 PM
    shygrneyzs
    I have heard of this because my Mother's older sister was diagnosed with this when she was 51. It is scary and there is no cure, although there are treatments for some of the symptoms. My Aunt had gained so much weight after menopause and has lived in pain for the last 15 years. She is also depressed and has severe headaches.
    My aunt's doctor has thought that this might be genetic and wants to test my cousins and myself who are post menopausal and having some of those very same symptoms. My doctor says it is just fibromyaliga for me but this kind of goings on with my Aunt makes me wonder.

    I have great empathy for whoever in your family or circle of friends has been diagnosed with this. It is no picnic but it is also no death toll.

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