Understanding Dercum’s Disease

Dercum’s Disease is condition, affecting mostly adults, where fat throughout the body becomes very
painful. Small nodules, consistent with the texture of marbles, begin to form in the fat of the arms,
chest, back, abdomen and the legs. Once these marble-like nodules start to appear it becomes painful
for the person to do normal activities such as resting an arm on a desk to use a computer.
Dercum’s can cause other symptoms as well including Cognitive difficulties (poor memory even in young
people) gastrointestinal problems, shortness of breath and heart palpitations. Additionally, the person
can become very fatigued and eventually it becomes difficult to live a normal life, which often leads to
Although Dercum’s was first diagnosed in 1888 and may be considered a “common disorder,” there is
little research to be found. It is believed that the change in fat is secondary to other illnesses but much
more research needs to be done in order to find the cause for this debilitating disorder.

 

Dr. Karen Herbst on Dercum's Disease

Dercum's diseases is a rare condition where fat tissues lump together and cause pain in
different areas on the human body. More typically, these lumps appear on the arms, legs, back,
chest, and abdomen, but sometimes these lumps appear on the head, hands, and feet. Pain is the
most common complaint from those with Dercum's. To help ease the pain, most start with
over the counter drugs such as Tylenol and Advil but when these fail, they switch to heavier
drugs such as anti-depressants. There are also nerve specific pain medications that have been
successful in reducing pain for those with Dercum's disease. The least recommended of all drugs
is Opioids, but they too can be helpful in reducing pain in patients. Surgical procedures can be
done as well, but they can vary from person to person. An example is Liposuction. Liposuction
can help reduce the pain caused by Dercum's but it does not eliminate the pain itself. Patients
must be aware that the pain will reoccur. Though liposuction can be helpful, more research must
be done to better understand its use in relation to Dercum's. There are also many different
manual therapies of the skin that can be done to decrease pain, for example swimming.
Ways to slow down the growth of the lump caused by Dercum's is a healthy diet,
exercise, and food supplements that can improve inflammation, decrease reactive oxygen
species, improve lymphatic pumping and decrease the amount of leakiness in the capillaries and
lymphatics. Some of these foods include walnuts, Brazil nuts, and citrus rind. Living with
Dercum's disease can be difficult but some days are better than others. It is recommended
though, that on good days, not to overwhelm your body, continue to eat healthy, exercise, and
have a good nights sleep.
Dermatologist, surgeons, and rheumatologist are best qualified to diagnose Dercum's
disease, but patients can assure their doctors knowledge by obtaining the white paper. The white
paper is the guide to understanding Dercum's disease. It includes studies and evidence of the
severity of the disease. It also includes treatments for the disease as well.
Research is being done to help cure Dercum's disease. Researchers are hoping to
phenotype people with Dercum's and do specialized research of the immune system to discover
if inflammatory cells have anything to do with the disease. The research findings will drive
treatment methods. Researchers are actively raising money in the United States to help continue
the research overseas.

 

Lipedema and All 4 Fat Disorders

Fat Disorders - Dr. Herbst Video 1 of 5

In part one of the fast disorders videos section Dr. Herbst introduces her topic of
discussing the four fat disorders. The first disease that Dr. Herbst focuses on is Madelung’s
Disease. Madelung’s Disease often consists of fat on the vase of the neck and comes about as a
result of brown fat cells. In every one out of two-hundred fat cells normally there is one brown
fat cell. Brown fat cells are common in babies and cause them to give the warmth that they do
because the brown fat cells burn energy. Madelung’s Disease can cause increased fat in some
areas of the body while creating loss in other areas making a standard human body appear
extremely disproportional. Madelung’s Disease is often related to heavy alcohol usage but can
occur in patients who do not even drink alcohol. According to Dr. Herbst none of the fat diseases
can turn into cancer unless the fat disease is accompanied by actual obesity. Madelung’s Disease
can occur on just the limbs and random body parts such as the tongue or forearm. Madelung’s fat
cells are larger than normal fat cells.
The second fat disorder that Dr. Herbst addresses in this video is Familial Multiple
Lipomatosis, which commonly referred to as FML within the lipedema community. FML most
often occurs in families and if a parent has FML they have a fifty percent chance of passing it
down to their offspring. FML consists of many lipomas that do not cause pain and suffering and
the only treatment for the disorder is surgical removal such as liposuction. Even when FML is
removed surgically, another lipoma can quickly grow right next to the original spot of the disease
where the incision from surgery was made. FML is one of the most neglected fat disorders
because it is considered by doctors and the medical community as healthy fat that rarely ever has
any negative side effects.
At the end of the first video Dr. Herbst begins to focus on Lymphedema. She notes that it
is now common knowledge that lymphedema is a polygenetic disease which means that the
disorder occurs in not just one gene but multiple genes. Dr. Herbst notes that the flow of a lymph
within a woman is completely normal and sometimes even faster than normal. This means that
the original problem in lymphedema is not lymphatics. As lymphedema progresses or is simply
present for a longer period of time, micro aneurysms appear in the lymphatics in the skin. In the
next video Dr. Herbst will continue to discuss the fat disorder of lymphedema.

 

Fat Disorders - Dr. Herbst Video 2 of 5

Dr. Herbst continues her discussion of lymphedema by beginning this video showing an
MRI of the micro aneurysms that occur in the lymphatics of the skin. Dr. Herbst notes that at
some point the various lymphs start to leak. Also, Dr. Herbst goes into detail on some research
currently being done for lymphedema sufferers. There are studies being done comparing levels
of fluid in women that have lymphedema and are treating it, to women who have lymphedema
and are not treating it. Another research study mentioned by Dr. Herbst is one that is comparing
the difference in muscle strength between woman with lipedema and woman with obesity.
The main discussion of this video focuses around Dercum’s Disease and Dr. Herbst
compares and contrast the fat disorder to lipedema. According to Dr. Herbst the hallmark of
Dercum’s Disease is painful lipomas that can appear all over the body. Patients with Dercum’s
Disease have lippy tissue everywhere and Dr. Herbst believes that there may be a difference in
genetics between Dercum’s Disease and lipedema. In families suffering from Dercum’s disease
the men get lymphomas and the woman get fat. In Dercum’s Disease both blood vessels and
lymphatic vessels are involved.
In the last half of the video Dr. Herbst clearly notes the differences and similarities
between Dercum’s Disease and lipedema. Dercum’s Disease causes very high pain in the
fat/lipomas early on in the disease, while the pain from Lipedema nodular fat can be minimal to
unbearable and disabling. In Dercum’s Disease the head, chest, trunk, and back are often affected
initially while in lipedema patients increased fat arises in the thighs, hips, and buttocks creating
extreme disproportion in the body. For Dercum’s Disease patients muscle involvement comes
early as a result of the disease. For Lipedema patients, the arms are affected in eighty percent of
patients.
The average age of development for Dercum’s Disease patients is 35, while lipedema
occurs in the childhood and adolescent years and can occur at time of pregnancy or during
menopause. In lipedema lymphatic dysfunction and alterations are present and in Dercum’s
Disease lymphatic dysfunction has been proposed by Dr. Herbst in 2012 but not yet proven.
Finally Dercum’s Disease causes patients to become extremely sick and very disabled according
to Dr. Herbst. The occurrence of Dercum’s Disease or lipedema is way less common in men.
In closing, Dr. Herbst recommends another doctor for Dercum’s Disease patients that
cannot seem to find any relief to their disease.



Fat Disorders - Dr. Herbst  Video 3 of 5

Dr. Herbst starts out the third part of the fat disorder videos series by mentioning that she
is working on a questionnaire and database for Dercum’s Disease in order to try and stimulate
more research in the medical discipline of fat disorders. In the first part of the video Dr. Herbst
introduces her own hypotheses on the Pathophysiology of lipedema and Dercum’s Disease. Dr.
Herbst believes that a different population of adipose (fat) stem cells give rise to abnormal fat
tissue. She notes that estrogen has an influence on genetically altered adipose tissue. Her final
part of the hypotheses argues that the interstitium, or the space between the fat cells, is abnormal
as a result of a number of reasons. Blood vessels leak more, lymphatic vessels become
overwhelmed and don’t pump enough and also leak, and altered connective tissue have changes
in collagen and/or elastic tissue allowing the subcutaneous fat tissue to expand, and therefore
may allow for dysfunction in both lymph and blood vessels. Dr. Herbst also mentions that it is
common knowledge that immune dysfunction seems to cause the interstitium to become
abnormal but from her tone she does not seem to agree with that reasoning.
In the next section of the video Dr. Herbst shows the audience a visual how large fat cells
increase seven to ten fold in diameter and three hundred to one-thousand fold in diameter when a
person is eating. Dr. Herbst goes on to note the lipedema Adipose Histology. The histology
begins with robust macrophage infiltration followed by loss of adipocytes to necrosis with
simultaneous proliferation of adipose-derived stem cells. Finally high levels of interstitial
fibrosis and edema arise leading to adipocyte hypertrophy.
The text topic of Dr. Herbst discussion focuses around the sources of estradiol for lippy
patients. The sources of estradiol include ovaries, testosterone converted to estradiol by the
aromatase enzyme in fat, testosterone converted to estradiol in fibroblasts, and veins and arteries
that produce estradiol and estrone. According to Dr. Herbst estradiol produced may not be
detected in the blood and could alter vessels in lipedema patients to promote the production of
estradiol or its metabolites.
In the final few minutes of the third section of the video, Dr. Herbst introduces another
fat disorder called Ehlers Danlos or EDS. EDS was first described by a Danish dermatologist
Edvard Ehlers and a French dermatologist Henry-Alexandre Danlos in 1899 and 1908. EDS is a
group of inherited disorders that are caused by a genetic mutation in collagen in most but also
elastic fibers that precipitates defects in the synthesis and microstructure of connective tissues.
The derangement of collagen or elastic tissue can affect the strength of muscle, joint mobility,
and the support system of organs and vascular structures. Prior to 1997, EDS was classified into
10 variants. In 1997, researchers re-categorized the types of EDS based on descriptive
nomenclature. The prevalence of EDS in literature varies between 1/10,000 and 1/25,000. Dr.
Herbst will continue to touch on EDS in the fourth fat disorder video.


Fat Disorders - Dr. Herbst Video 4 of 5

To start the fourth section of the fat disorders video series, Dr. Herbst continues her
discussion of Ehlers Danlos or EDS. Most patients that request treatment for EDS are female just
like most lipedema patients. Dr. Herbst also mentions that the use of compression material over
time can train the fat of lipedema patients that it should not be there. Dr. Herbst also brings up
another visual comparing the tissues of a normal patient with those of a lipedema patient. Normal
tissues are tight together and all the same size while lippy tissues have spaces between them and
some grow to be extremely large as a result of fluid build-up.
In the next part of her discussion on fat disorders Dr. Herbst names some medications
that can be used to curb many of the issues that lipedema patients have. Kempferia Parviflora or
KP is a plant from Thailand that reduces the size of large fat cells by activating ATGL and HSL.
KP prevents adipocyte hypertrophy, increases fatty acid that leaves the cell, and normalizes the
fat cells. Another medication Dr. Herbst recommends is Dextroamphetamine which releases free
fatty acid while also decreasing the size of the fat cell and normalizing blood cells. For issues
with inflammation Dr. Herbst recommends five-hundred micrograms of selenium per day and
green tea.
Finally Dr. Herbst ends her presentation on fat disorders with a detailed list of the
treatments for any fat disorder. Dr. Herbst believes that the treatment of any fat disorder requires
a multi-pronged approach with many different aspects needed in order to bring about a
significant change. Patients suffering from fat disorders should make a change in eating patterns
that includes more veggies and healthy proteins and less processed foods in order to lower the
glycemic index. In addition to changing eating patterns, patients should partake in exercise and
specifically whole body vibration activities such as swimming. Patients should also take part in
complete decongestive therapy including compression, wrapping, kinesiotape, sequential
pneumatic pump therapy, and skin care. Finally fat disorder patients should take supplements,
medicines, receive psychological help, medical support, and social support as needed. The final
point that Dr. Herbst makes is that one lippy lady can make a huge difference in the fat disorder
community. Working together as one the lippy community is much stronger and much more
likely to find a remedy for the various fat disorders.


Fat Disorders - Dr. Herbst  Video 5 of 5

In the final of the five videos on fat disorders Dr. Herbst answers the personal questions
of her audience. In summary, Dr. Herbst says too little estrogen and too much estrogen is not
good and patients need to find a happy medium. A question that was asked was regarding
whether wearing compression a lot can weaken muscle. Dr. Herbst responded by very clearly
stating that compression does not weaken muscles in any way. Another important point that Dr.
Herbst made in her response to the questions is that if you are a lippy patient you are supposed to
be extremely healthy and not have many other medical issues. Lipedema is not the cause of
many other medical issues like obesity is for those that are actually obese. The final major point
Dr. Herbst made in her response to the audiences’ questions is that every lippy lady should have
a full vibration body machine and use it twice a day.

 

Miscellaneous

Q&A Panel 1 of 2

 

Q&A Panel 2 of 2