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Dercum’s Disease: Let's create a support group

Chronic Pain | Last Active: 3 days ago | Replies (119)
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@ellenbret

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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Replies to "Oh how wonderful it is to hear from others sharing my strange medical journey. Misery does..."
madvzebra | @madvzebra | Oct 22 1:30pm

Thanks so much Ellenbret!
I have had 3 lipomas removed a few years back. They turned out to be angiolipomas with blood vessels. The surgeon was great, and said it was very weird doing surgery on me with the friability. The lipomas were in my abdomen creating pressure and pain. Removal helped with the pain, and I have a few more that cause sig pain when I have flares and/or costochondritis especially on the tips of my ribs. UGH! But I have loads of lipomas and would love to have a consult with her. I’ll check on her site for updates. Thanks!!!

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c3p0 | @c3p0 | Oct 23 7:13pm

I was all set for this trial. (CBL-514) Had my paperwork in and e signed and was then told I was too old. That took all the wind out of my sails. I am starting all over again with another plan of attack but there is little else I can do. I wish you luck in your journey. This is such a frustrating disease due to the fact it is so unheard of and nobody I've seen seems to worry about it.

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