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Dercum’s Disease: Looking to connect with others

Chronic Pain | Last Active: 6 hours ago | Replies (129)
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@madvzebra

I would also LOVE to know if there is a skilled surgeon in WI or surrounding states experienced in removing lipomas on multiple Vascular EDS patients. Anyone have info on that? Thanks!

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Replies to "I would also LOVE to know if there is a skilled surgeon in WI or surrounding..."
ellenbret | @ellenbret | Oct 21, 2024

Oh how wonderful it is to hear from others sharing my strange medical journey. Misery does indeed love company! I no longer feel I'm going insane. Regarding surgery to remove lipomas, Dr. Herbst states they will just grow back. See my earlier post regarding her plans to research a new drug CBL-514 which will be injected into the lipomas to reduce their size thus decreasing pain. So nice to connect with you ladies! 💜

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c3p0 | @c3p0 | Oct 24, 2024

All I have ever heard is that removing Lipomas only causes more to come. I saw a video from Dr. Herbst where a patient had a lipoma removed and when they removed the bandage there were 4 more. I don't know about EDS so I'm not trying to steer you anywhere but ask questions if you decide.

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