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

Chronic Pain | Last Active: 1 day ago | Replies (115)

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@ellenbret

Hi, I'm new to this group and seem to be one of the many trying to get diagnosed. I currently live in northern Idaho, but I'm returning to Arizona this summer to be closer to friends and family and hopefully medical providers who can help me. A previous post stated there's no one at Mayo in Arizona who treats Dercums. Does anyone know of any other doctors in the Phoenix area? I do know Dr Karen Herbts from Tucson is no longer seeing patients as of last month, as she is devoting her time to research. There is a new drug for Dercum's which has been fast tracked by the FDA, and I'm hoping that she's going to be involved in the trials to make it available to those of us with the condition. It is an injection into the lipomas. There is hope, hang in there!

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Replies to "Hi, I'm new to this group and seem to be one of the many trying to..."

@ellenbret, you may wish to contact Mayo Clinic in Phoenix to inquire. Here is more information about treating lipomas and care at Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/lipoma/doctors-departments/ddc-20374475
To find out more, you can contact Mayo Clinic either online or by phone. See details here http://mayocl.in/1mtmR63

Is this the new drug you're referring to (CBL-514)?
Novel Fat Reducing Drug Gets Fast Track Status for Dercum Disease https://www.empr.com/home/news/drugs-in-the-pipeline/novel-fat-reducing-drug-gets-fast-track-status-for-dercum-disease/