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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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@dougsdercumsdisease

@ellenbret I have an extremely severe case of Dercums disease along with a number of additional illnesses that my speacilist believe my DD may have caused but anyhow if she when you get the chance to read some of my reply’s you will get a better idea of everything I’ve gone through this year in 2024 just to find enough relief to get this thing off my mind because at this point the pain is debilitating and I am beginning to lose some of my mobility due to all of the adipose tissue that my body has been rapidly producing this year alone possibly due to all of the stress that I’ve gone through being my own advocate trying to do everything on my own rid my drs so that I can get real help but it hasn’t come without a lot of trials and errors that I have begun to share with the group here!

Anyhow I have been trying to find the one and only FDA approved injection (CBL-514) that was fast tracked for DD patients earlier this year and I am so happy to have come across your post here and thank you so very much for the update!

@ellenbret could you please include me on your list of patients who you are working as hard as you can for to help get this injection in the have if our specialist?

Also do you happen to know if we have anywhere on our forum where someone outlines the best combination of prescriptions to help keep this disease in check?

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Replies to "@ellenbret I have an extremely severe case of Dercums disease along with a number of additional..."

I have read a lot of your posts. All I have found. Somewhere I saw you are moving to AZ? If I was in Arizona I would contact Dr. Karen Herbst in Tuscon and make an appointment. I would also try to get into the clinical trial for CBL-514. I don't think it's too late. I tried but my age prevented me from participating. I hope you investigate these options. You have legitimate chances to get some real help. Just read all you can from Dr. Herbst for the most expert advice. I wish you the best of luck in finding some help.