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Hi, I'm tom9437! Does anyone else have Dercum's disease?

tom9437

Waiting diagnosis of Dercums disease. Does anyone else have this.

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janer1967

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

Ami2301

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?

Cher_Alumni

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.

tom9437

Hi thank you for the information. I hope you are well
tom

Bmichelle796

I have it. I get zero help or support though

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