Hi, I'm tom9437! Does anyone else have Dercum's disease? — Scope | Disability forum
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Hi, I'm tom9437! Does anyone else have Dercum's disease?

tom9437
tom9437 Community member Posts: 2 Listener
edited March 2021 in Rare, invisible, and undiagnosed conditions
Waiting diagnosis of Dercums disease. Does anyone else have this.
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi and welcome 

    Sorry I've not heard of that condition 

    Hopefully other members may know about it 

    Just wanted to say hi feel free to have a look around and join in 
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @tom9437 and welcome to the community! Sorry i've not heard of the disease either, would you mind telling us a bit about the disease? :)
    Disability Gamechanger - 2019
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited March 2021
    Hello @tom9437 and welcome to our community!  How are you doing today?

    I haven't come across anyone with Dercum's disease before and did a little research on what exactly it was.  This Rare Diseases website explains:
    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. 
    That sounds very painful so I'm sorry you are going through this :(  The Genetic Alliance website has a 'Finding support for a rare or genetic condition' webpage that might be useful to find others experiencing the same condition and I hope you get a diagnosis soon.  

    Just to add, I'm moving this post to our Undiagnosed and rare conditions category and tweaking the title so that anyone else with Dercum's disease can spot your post and reply.
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  • tom9437
    tom9437 Community member Posts: 2 Listener
    Hi thank you for the information. I hope you are well
    tom
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