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

Posted by vowelmistress @vowelmistress, Jun 13, 2022

I am having pain in my feet and ankles. I do have dercum’s and I am wondering if the lipomas in my legs can cause this? Also are there any surgeons in the Eau Claire area who specialize in liposuction for dercum’s patients?

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dougsdercumsdisease | @dougsdercumsdisease | Nov 14 11:19am
In reply to @c3p0 "I just contacted Caliway biopharmaceuticals on 10/18/24 and they told me the fast track has been..." + (show)
@c3p0

I just contacted Caliway biopharmaceuticals on 10/18/24 and they told me the fast track has been stalled while they do the clinical trials for phase 3 of CBL-514. I'm sorry for the news. Hopefully once the trials are completed it will get reinstated. I will do anything to help anyone to the degree I can. Hopefully we all have that as our goal on this support group.

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@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?

REPLY
1 reply
c3p0 | @c3p0 | Nov 14 11:43am

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.

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c3p0 | @c3p0 | Nov 14 11:54am
In reply to @dougsdercumsdisease "@ellenbret I have an extremely severe case of Dercums disease along with a number of additional..." + (show)
@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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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.

REPLY
1 reply
c3p0 | @c3p0 | Nov 14 3:46pm
In reply to @jillo65 "I want to know if anyone else suffers from lipoma pain? Do you know if Mayo..." + (show)
@jillo65

I want to know if anyone else suffers from lipoma pain? Do you know if Mayo Clinic can help?

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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

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dougsdercumsdisease | @dougsdercumsdisease | Nov 14 4:08pm
In reply to @c3p0 "I have read a lot of your posts. All I have found. Somewhere I saw you..." + (show)
@c3p0

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.

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@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?

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c3p0 | @c3p0 | Nov 25 11:02am
In reply to @dissidentdaughter "I’ve been doing my own research for years on the cause of my pain and only..." + (show)
@dissidentdaughter

I’ve been doing my own research for years on the cause of my pain and only recently was pointed in the direction of lymphedema, lipedema, and Durcum’s. I do think I have DD. But how to get a diagnosis when it is so rare that many doctors haven’t heard of it. I do live in Minnesota. Are the doctors at Mayo who specialize in this at all??

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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!

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c3p0 | @c3p0 | Dec 2 10:40am
In reply to @jillo65 "I want to know if anyone else suffers from lipoma pain? Do you know if Mayo..." + (show)
@jillo65

I want to know if anyone else suffers from lipoma pain? Do you know if Mayo Clinic can help?

Jump to this post

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.

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daylily4me | @daylily4me | 4 days ago
In reply to @iamrare2 "@colleenyoung Thank you for your response. I think that your question of how long have I..." + (show)
@iamrare2

@colleenyoung Thank you for your response. I think that your question of how long have I been living with Dercum's? is a good question. Honestly I can't answer that until I answer a more important question of how long did it take me to get the right diagnosis?

I was 17yrs old when I found the first lump. Through out my 20's I noticed more lumps began appearing in my arms and upper legs and becoming painful. At 33yrs old I showed them to my primary doctor and who told me that they were lipomas (fatty tumors) and that they were nothing to worry about and that they shouldn't cause pain.
After many years complaining about the pain I was in I was diagnosed with Fibromyalgia. In 2004 and with a new doctor and with more lipomas my new doctor agreed that I needed to see a surgeon. My first surgery I had 12 lipomas removed from my lower arm. The fatty tumors removed help ease some of the pain around the area. My 2nd surgery 28 were removed and it was discovered that I had 2 different types of lipomas. My 3rd surgical removal was 42.

In 2008 I realized I needed to find out what exactly was going on with my body myself. I started researching lipomas and found much information that I gave to my doctor. He was not in agreement with what I found,he told that nothing was wrong with having multiple fatty tumors. I felt so much anger that he wouldn't listen to me or read the information. I left the office crying never to see him again.

Once again I had to find a new doctor. After meeting my new doctor he was the answer to my prayers. He was interested in my case, he listened and he read the info I had researched. He referred me to different doctors to rule anything out. He sent me to a dermatologist at our local University Hospital which also is a medical research facility. It was there that I got the diagnosis of Dercum's Disease and familial multiple lipomatosis (FML). I finally had answers about what was wrong with me but not how to treat it.

I have multiple painful lipomas in my arms, legs, thighs, groin, hips, knees, shoulders, upper and lower back, my stomach and breast. I suffer chronic pain,fatigue, muscle weakness, joint pain and other symptoms. I have had several surgeries with 167 removed. I have 3 different types. It runs in my family. My mother has them as well as 3 brothers,a niece and my son. No one else in the family has Dercum's or as many as I have. Some have had to have them removed.

Colleen, as you can tell by my story I have lived with Dercum's years before my diagnosis. Getting a diagnosis is not easy and treatment is even harder. With the mindset of primary physicians regarding lipomas as simply fatty tumors, nothing to worry about and/or the belief that they don't cause pain can hinder the fact that research is needed. Lipomas, DD, FML, will
continue to be rare until primary doctors start to report patients who suffer from this to CDC, Nord or others who need to know about us. We are rare but there are many more out there!

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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.

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1 reply
c3p0 | @c3p0 | 3 days ago
In reply to @daylily4me "I finally saw my PA a few days ago about the possibility of having Dercum's disease...." + (show)
@daylily4me

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.

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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!

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