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How long did diagnosis take? Dercum's Disease

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SGoody
SGoody Community member Posts: 2 Listener
edited April 30 in Start here and say hello!
I’m looking to speak to anyone who has Dercum’s Disease and see how they are getting on and how long it has taken them to obtain an official diagnosis. as I’m having trouble too. as it is such a rare yet debilitating disease (also have Fibro and Osteoarthritis)
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  • Jimm_Scope
    Jimm_Scope Posts: 3,215 Scope online community team
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    Hi @SGoody and welcome to our community :) I've not actually heard of Dercum's Disease myself, would you mind informing me about it? I understand if not! I just figured the best way to learn about something is usually from someone who is experiencing it, or is considering they may be and looking to be diagnosed.
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  • SGoody
    SGoody Community member Posts: 2 Listener
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    Hi you can find lots online and there is a USA org, not one in UK , it’s extremely rare and hard to get diagnosed, put in similar category as fibromyalgia. Lipodema lymphoedema etc

    “Dercum’s disease is a rare disorder characterized by multiple, painful growths of fatty tissue (lipomas). Fat tissue is known as loose connective tissue, hence Dercum’s disease is a loose connective tissue disease. The lipomas mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously) but also can be found deeper in the body coupled to muscle, tendons, ligaments or bone by connective tissue. Pain associated with Dercum’s disease can often be severe. Pain may be caused by lipomas pressing on nearby nerves or inflamed connective tissue, also called fascia, which is commonly associated with the lipomas. Dercum’s disease mainly occurs in adults and more women are affected than men. Some affected individuals may also experience weight gain, depression, lethargy, and/or confusion. “
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