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

@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?

I also have Dercum's. There are no Doctors that seem interested in helping because they don't know anything about it. I can only give you advice on a Doctor in Tuscon who does know and care about it. Dr. Karen Herbst. Look her up online. You will find much information and you could also make an appointment with her. I know if you're far away from Tuscon this might be impractical. You may be the worst case I've ever read about. My heart goes out to you for your struggles. I can't put any links up here but just do some searching for fat disorders, connective tissue disease, and Dr. Karen Herbst. Also, there is a clinical trial for CBL-514 that is about to take off. it is a small molecule injectable that shrinks the lipomas. I was ineligible due to my age. You have to be 18-64 years old. If you're interested search clinical trials or CBL-514 Caliway biopharmaceuticals. Good luck and God bless you.

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.

Yes I suffer from lipoma pain. I am presently trying to get to Mayo but I don't have high hopes. I went to University of Iowa hospital to a dermatologist specialist and a geneticist with absolutely no help. I did get my diagnosis for Dercum's but I already knew I had it. I needed it to get into clinical trials but there are very few. They didn't even run genetic testing. I asked my GP to send me to an endocrinologist and immunologist but he said they probably wouldn't see me, So I am again in Limbo. The best place to seek treatment is Tuscon. Dr. Karen Herbst. That is not practical as I am very far from there. My pain moves all over from day to day. I also suffer from depression and brain fog

@ellenbret you may have me confused with someone else as I reside in central Ohio with no plans of moving at this time however thank you so very much for the information on Dr Herbst and the clinical trials. I am 43.5 years of age and would absolutely love to be sorry if the trials as I have these things growing all throughout my body (painful lipomas, Adipose tissue, and hemoglobin’s) it feels like tree roots growing throw out my body making all of my symptoms worse by the day and as my disease worsens my stress, anxiety and depression goes up causing even more inflammation throughout my body and rapid growth / plums of these marble size lipomas fusing together.

I know you cannot provide links but could anyone provide me with more information on tbd clinic trials like where they are taking place this round when the trials start who exactly I can contact to be considered for the trials etc?

Hi DissidentDaughter,
I was diagnosed in less than a year. That is remarkable after hearing so many people went years without a diagnosis. I knew I had Dercum's through my own research but like you none of my doctors had ever heard of it. I got my oncologist to refer me to University of Iowa hospital in Iowa City. I saw a geneticist there who gave me the diagnosis, Dr Hatem El-Shanti. There is also a doctor in Dermatology there who could probsbly do the same. He is a very kind doctor (Dr. Vincent Liu) I suggest you try to get an appointment there. I think I would go to Dr. Liu. The appointment may take awhile to get in but I believe Dr. Liu would be much quicker. I was referred afterwards by my GP to Mayo but they denied my referral saying they couldn't do any more for me than Iowa City. If you are younger than 65 I have a suggestion. Look up CBL-514. You will find a clinical trial for an injectable that is new and has had much success. I was signed up and ready to attend but I am 69 so I got disqualified. If you can get a diagnosis quickly you still have time to get in the trial. I wish you good luck with a diagnosis and hopefully you get into the trial. It's in Ofallen,Mo. You only go there about 8 times and they pay your transpotation. hotels, and meals. Good luck my friend!

They have no treatment at Mayo clinic for Dercum's disease. I've had 2 referrals and both were cancelled. I spoke with a scheduler there and he told me when he looks up the disease it is red target which means they have no doctors to treat it.

I finally saw my PA a few days ago about the possibility of having Dercum's disease. She said no because the lipomas don't hurt when you press on them. So, what I would like to know from the people that have been diagnosed with Dercum's, does it have to hurt when one presses on them or, as with me, does the area by them hurt when I do a lot of physical activity? I will have an appt. with a dermatologist in January to ask the same and check out if the areas I think are lipomas are just fat pads as my PA is thinking. I did have an area I thought could be a soft tissue sarcoma (I am a stage 3 BRCA survivor) and that was a lipoma by US. That was 2 years ago and since I have quite a few more lumps. My weight is increasing for no apparent reason.

Hi daylily4me,
Dercum's is such a mixed bag of symptoms. I had one dermatologist tell me I didn't have it because I didn't match a picture she had. It was a different type of dercums. Type 4. I have type 1 and 2. I got my diagnosis from a geneticist, but most dermatologists should be able to diagnose it. Don't give up. I have pain all over not just where I have lipomas. That's only one of the symptoms. I have read lots of people gain weight quickly. I haven't. I stay pretty much the same so far. I have known I had Dercum's long before I was diagnosed. I've known for almost 2 years now. Keep searching. Even if you are diagnosed it's a struggle to find help. Best of luck to you!