Why All This Pain? Decrum’s Disease… Who Are You?

decrum's disease-chispa MagazineCalling all caring physicians—Dercum’s Disease is an extremely rare disorder characterized by multiple, painful fatty tissue, also know as lipomas—patients need help and they’re desperately seeking you.

These painful growths can appear on the trunk, the upper arms, the upper legs, and they’re like angry critters just below the skin. Sometimes severe, the pain can even take your breath away. What else goes on with DD? Mix in fatigue, generalized weakness, a tendency to bruise easily, headaches, irritability, stiffness after resting, bouts of depression, dry eyes, heavy legs, on and on.

The exact cause of Dercum’s Disease (DD)? Unknown.
How many caring physicians willing to help a suffering patient? One, that we know of, and another one willing to review medical tests and point someone in the right direction.

Who are we referring to? Dr. Karen L. Herbst, a true Decrum’s pioneer, and Dr. Louis B. Kalish, he’s one of those few caring doctors who goes out of the norm and helps, just to help. And although he’s no DD specialist, and that’s our topic at-hand, he’s an incredible immunologist.

So what does Dr. Herbst have to say about this rare disease? Lean in…

Chispa Magazine: What life event altered your increased attention toward rare diseases, specifically fat disorders?

Dr. Karen Herbst: I have hypermobility and have fat tissue that I resistant to loss by diet and exercise.  This sparked me to look at mothers and daughters and the fat tissue they have that is similar and different and wonder about genetics. In addition, I marveled at how men as they grew older developed thinner arms and legs and larger abdomens realizing that hormones played a role in fat location.

Chispa Magazine: Is there a growing number of DD patients in the US versus the number of specialists for this rare disease?

Dr. Karen Herbst: I am not sure if the population of people with DD is growing but there is a lack of specialists that can help with treatment. We really need a gene or biomarker to help in treatment and a better understanding of DD.

Chispa Magazine: You are considered “the” DD expert, along with other fat disorders, yet there is only one of you… Are any plans in place to duplicate your expertise or train other medical professionals in order to treat the growing number of patients?

Dr. Karen Herbst: We are working on educational materials right now.

Chispa Magazine: If someone suspects they have this painful condition, due to its symptoms, what should they do?

Dr. Karen Herbst: Any caring healthcare provider can help someone with DD.  The tissue needs to be examined and if nodular and heavy, they should receive hands on therapy both deeply and through manual lymphatic drainage.  Pain needs to be controlled and other medications and supplements to help vessels considered including diosmin, arginine, horse chestnut seed extract and amphetamine compounds.

Chispa Magazine: Are symptoms very similar in each patient or do they vary drastically from case to case?

Dr. Karen Herbst: Some symptoms are general like pain, fatigue, change in cognition, gut symptoms, muscle and joint pain and muscle weakness. However, there are other co-morbidities that may differ amongst people such as autoimmune disease, postural orthostatic tachycardia syndrome, mast cell disease, severe allergies, etc. There are also different kinds of Dercum’s disease such as the diffuse type with small nodules in most of the subcutaneous fat which is different from the large nodules of fat similar to familial multiple lipomatosis or the angiolipomas. The similarities is that they all have nodular painful fat.

Chispa Magazine: Back pain is noted as a symptom, same as heart palpitations and dry eyes, does this mean DD causes issues in the back, heart or eyes, such as issues with discs and perhaps causes supraventricular tachycardia, or those who have disc issues or supraventricular tachycardia are prone to DD?

Dr. Karen Herbst: Back pain is a common symptom and therefore may or may not be related to DD.  Hypermobility can be found in people with DD which can affect joints, tendons, bones and vessels.  Structurally, DD has not been associated with heart disease but it has been associated with early heart (coronary artery) disease. Heart palpitations are common in DD but it is unclear why.  Dry eyes and dry mouth may be a result of poor perfusion of tissue.

Chispa Magazine: Have you studied a correlation between DD and PCOS, and/or DD and MTHFR mutation?

Dr. Karen Herbst: Some people with DD have PCOS but PCOS is common and no direct correlation has been found.  Similar to MTHFR, we do not know if there is a correlation with DD.  We really need to find the gene so that we can confirm such correlations.

Chispa Magazine: In your website you provide a summary of a good diet for those with DD, would you compare this approach to the Anti-Inflammatory Diet or do you recommend something a little more drastic, such as the Paddison Program, which has provided fantastic results for diseases like Rheumatoid Arthritis?

Dr. Karen Herbst: Diet therapy is very personal. I do like the anti-inflammatory diet and if that does not help, then the Paddison Program can be implemented. If people really like to eat meat, the ketogenic diet is also helpful.

Chispa Magazine: On your website, you list some evidence-based treatments, if you had to choose two approaches to highly recommend, which would they be?

Hands on deep tissue therapy and Dextroamphetamine.

Chispa Magazine: Because there is a lack of knowledge with its rarity, how can a patient confirm DD is truly affecting them when doctors are inexperienced?

Dr. Karen Herbst: DD is in dermatology textbooks therefore they are the first go-to doctor.  However, a good doctor of any kind who reads my white paper, my paper “Rare Adipose Tissue Disorders Masquerading as Obesity,” or other published papers can help diagnose DD.

Chispa Magazine: Let’s take the case of someone who starts to have symptoms. They begin to experience breathtaking pain, end up on their back, not able to move, which leads them to a massage therapist to workout the “knots” on their back only to hear them say, “What is this, I’ve never seen this before…” They then go to an excellent Acupuncture Doctor, who says the same thing. Because the pain continues, they make an appointment to see their General Practitioner who says they think it’s painful cellulite, and sends them to a dermatologist. Dermatologist performs a biopsy of one of the painful nodes. Side note: Patient is told the biopsy will most probably provide limited information. Meanwhile as they wait for the biopsy results, pain begins to spread in other areas. They visit your website and present recommended blood tests to a new General Practitioner who says “These tests are non-specific to this (or any other) condition and they won’t change the treatment options.” The family affected is in crisis-mode and they are trying to come up with a plan. How would you address this family?

Dr. Karen Herbst: A biopsy does not confirm Dercum’s disease by things they see in the tissue but by things they do not see like sarcoma. Usual diagnoses after the biopsy are mature adipose tissue consistent with lipoma, lipoma or angiolipoma. In angiolipoma. There are blood vessels with fibrin clots and dead sections of blood vessels—in essence, angiolipomas contain dead tissue; no wonder they hurt.

I would start with an exam to confirm the diagnosis and check for all forms of vascular dysfunction.

Diagnostic imaging of the lymphatics or veins would be considered. Blood testing would also be considered including genetic testing and testing for inflammatory markers. To help flow in the tissue, pool therapy, cyclic variations in adaptive conditioning (CVAC), hands on therapy, manual lymphatic drainage, sequential pneumatic compression pump would be considered. Supplements and medications as indicated.

Chispa Magazine: Your website states you are only seeing existing patients, would you consider consulting patients via tele-medicine?

Dr. Karen Herbst: Yes as long as the patients were in Arizona or California where I am licensed to practice and I will speak to physicians who contact me.

Do you think you or someone who know or love has Decrum’s Disease? You’re not alone… I am desperately seeking a caring physician, too. For support or questions, feel free to send an email.

Photo by Cristian Newman

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Mavian Arocha-Rowe

Mavian Arocha-Rowe

Editor-in-Chief at Chispa Magazine
Mavian Arocha-Rowe is known as an asset to the business and communications industry and is motivating, coaching, and advocating “your authenticity should be your strategy,” for all women, regardless of their season and roles. She has served as editor-in-chief for five publications and for the past 20 years, has directed multiple art and marketing departments as creative director and brand manager. What supersedes all of these great accomplishments and past career endeavors is her new role as wife and mother living in Atlanta. She has a vibrant, warm, and giving soul and is busy working on the formula for balance: wife, mother, daughter, sister, mompreneur, marketer, business coach, cook, writer, interior decorator, and the list goes on. Challenging herself to discover and bravely pursue the calling for her life, Arocha-Rowe hopes throughout this journey she helps other women, and businesswomen discover and pursue their life’s assignment.

Mavian Arocha-Rowe

Mavian Arocha-Rowe is known as an asset to the business and communications industry and is motivating, coaching, and advocating “your authenticity should be your strategy,” for all women, regardless of their season and roles. She has served as editor-in-chief for five publications and for the past 20 years, has directed multiple art and marketing departments as creative director and brand manager. What supersedes all of these great accomplishments and past career endeavors is her new role as wife and mother living in Atlanta. She has a vibrant, warm, and giving soul and is busy working on the formula for balance: wife, mother, daughter, sister, mompreneur, marketer, business coach, cook, writer, interior decorator, and the list goes on. Challenging herself to discover and bravely pursue the calling for her life, Arocha-Rowe hopes throughout this journey she helps other women, and businesswomen discover and pursue their life’s assignment.