We hope you’ll take the time to look for your questions here. Again, if you can’t find answers, you’re more than welcome to contact us!
What kind of disease is Dercum's?
Has the exact gene mutation been identified?
How exactly does Dercum's mutate fat cells?
Finding these uniquely mutated cells is the only current way to clinically confirm a diagnosis of Dercum’s Disease. However, it’s essentially a giant, risky gamble to go hunting for these cells. It would require a lot of tissue samples and an unfathomable amount of luck. In Dercum’s Disease, not every fat cell is mutated, but any fat cell could be mutated. Meaning each Dercum’s patient will have a mix of both healthy, normal fat and mutated Dercum’s fat. Even when dissecting and examining Dercum’s lipomas under microscopes it can be hard to find and pinpoint these mutated fat cells. That said, some pathologists have been successful in obtaining samples and staining them to make them visible for publication in peer-reviewed journals, starting with the original work of Dr. Francis Dercum. We encourage doctors to read the Articles we have available here on our website, as well as search through the PubMed database for additional scientific data.
Is it true that Dercum's affects women more than men?
Are all cases of Dercum's the same?
That triad of presentations is complicated enough on its own. To make matters even more complicated, most Dercum’s patients often also have a wide array of additional diagnoses. Current research has shown that the most common additional diseases are Irritable Bowel Syndrome, Fibromyalgia, headaches, arthritis, and depression.
But naturally, each body is unique and different. With all of the various ways in which Dercum’s can affect the body, it’s not surprising that it can have a unique domino effect in each patient. Take, for instance, the fat cell. With Dercum’s Disease, not every fat cell will be mutated, but any fat cell could be mutated. Meaning you’re likely to have a mix of normal, healthy fat, and the uniquely mutated Dercum’s fat cell. Because certain systems of the body rely on fat cells to function properly, it’s understandable that a collection of mutated fat cells could alter – however slightly – those bodily systems. So for instance, if your liver – which relies on fat cells to perform its function – is operating based on mutated fat cells, you’re going to have certain possibly unpredictable consequences. If the liver isn’t functioning quite normally, that can then have a domino effect on the kidneys, the bladder, and so on.
Because of that and the fact that each Dercum’s patient has their own unique array of additional diagnoses, it makes it exceedingly difficult to make comparisons or extrapolate much concrete data from small sample sizes of patients. Medical research in general relies very heavily on large sample groups and large control groups in order to help decrease the impact of variables such as these on medical data. This rule of thumb is doubly important in the Dercum’s community. Therefore we’d like to caution Dercum’s patients everywhere not to jump to conclusions or get frustrated by an apparent lack of quick action in the medical community based on either individual cases or small amounts of anecdotal evidence. It’s simply not safe or scientifically valid to do so.
What causes Dercum's lipomas to grow and hurt?
Again, it’s absolutely vital to note, this is all anecdotal; individual reports that can’t be verified or counted upon to concretely determine a factual root cause. There just hasn’t been enough research to know for certain if there is a direct link or if it’s just coincidental. That said, in this case, the anecdotal evidence can caution us to be careful about avoiding injury, which in general isn’t bad advice anyway. It’d be reasonable for even a perfectly healthy person to avoid hurting themselves, or to remove any potential causes of irritation. In this case, using anecdotal evidence as a cautionary tale can’t hurt, cause we already know injuries are bad for our health anyway. So just add that to the giant pile of reasons to avoid hurting yourself.
Do you know of a doctor where I live who is familiar with Dercum's?
I think I may have Dercum's Disease. What do I do?
Second, learn to speak your doctor’s language and bring them information that they know they can trust. That proverbial language is peer-reviewed medical journal articles. Anybody can publish whatever they want online. Just look at sites like The Onion! Just because it’s online doesn’t mean it’s true, accurate, or even safe. In order for your doctor to know they can trust the information literally with your life, they need to know the information has been obtained by following rigorous scientific standards, and that the data has been carefully reviewed by a panel of respected experts. That’s what peer-review means. It’s a safety net for you and your health. So please visit our Articles section, print out a few of them, and take them to your doctor. Encourage them to also search for additional information on PubMed. In our experience, it’s easy to spot the best doctors, because they’ll be eager, excited, and willing to learn about new things.
What can I do to improve my quality of life?
My pain is unbearable! Can anyone help me?
Will liposuction get rid of my pain or even cure my Dercum's Disease?
For additional information, we highly recommend you and your doctor read the following medical journal article available on PubMed: “Quality-of-life in patients with Dercum’s disease – before and after liposuction” by Dr. Brorson, Dr. Hansson, Dr. Manjer, and Dr. Svensson. They performed a multi-year study of 114 women, evaluating and comparing the pain and quality of life of groups who underwent liposuction and those who did not. They did find that there was a relatively minor decrease in pain immediately following the liposuction procedure(s). However, the pain returned to its prior levels – or worse, in some cases exceeded it – within two to five years. Furthermore, patients reported higher levels of post-operative pain and many had worse than average surgical complications. Given all of that, it appears that liposuction is a whole lot of risk for very little and very fleeting relief. There’s even some question if perhaps the pain relief might have been a surgical variant of the placebo effect – after the physical and emotional investment in surgery, a psychosomatic return in slightly lessened pain is a possibility. But much like all placebo effects, it’s short lived.
As such, most doctors no longer recommend liposuction for Dercum’s patients as a means of treating pain.
Is it true steroids worsen Dercum's Disease?
Are you aware of any research programs?
Is there anyone I can donate to, to try and get research started?
Please be wary, however. There are far too many people out there trying to mimic legitimate organizations, either at best under a misunderstanding of how scientific research works, or at worst, trying to bilk you out of your hard-earned money. It’s important to note, individual doctors conducting research do not solicit for donations! If you come across any “experts” who are busily campaigning for funds or behaving strangely, look for these red flag warnings of a disreputable doctor/advocate:
• Requesting that donations be given in their own personal name rather than through a respected institution.
• Charging exorbitant fees for consultations.
• Not accepting or cooperating with medical insurance.
• Seemingly seeking celebrity over science.
• Trying to offer medical advice online either for free or for a fee (which, incidentally, can be both dangerous and illegal).
• Adopting a “persecution complex”, as if they alone have all the answers and everyone from your own doctor to the medical industry or “big pharma” are somehow “out to get them”.
• Encouraging you in any way to either not talk to your own personal doctor, disregard their advice, or do something contrary to your doctor’s advice.
• Attempting to fast forward through the vital clinical diagnostic process for Dercum’s Disease of carefully ruling out other possible causes. No one can magically “feel your fat” and know for certain you have Dercum’s, rather than other potential causes like Madelung’s Syndrome, a thyroid issue, or any number of potential endocrine diseases or disorders.
Those are some of the many signs of an unscrupulous individual operating outside the scope of safe, respected, traditional medical science. Please, trust your gut. If something – anything – gives you the least amount of pause, please take that very seriously. Your money and your health depend on you listening to your instinct and working with trustworthy, careful, educated medical doctors who strictly follow and respect the scientific guidelines that exist purely for the sake of protecting your health. Just because someone claims to be working to benefit Dercum’s does not mean they are qualified or even have your best interests at heart.
For more information and to learn more about how research is conducted, please visit our Defining Research section.
If I can't help with research, what can I do to be helpful?
Quick! I just know that Fibromyalgia/Lipedema/Etc are early forms of Dercum's! How do I spread the word?
First off, anecdotal evidence – meaning just you alone, or just your friends, or just a small handful of patients – is not enough information to equal concrete fact. There is a solid reason medical research is conducted using very large numbers of patients compared against similarly large numbers of control groups. It’s to avoid the effect of many potential variables that could taint data, as well as to protect against leaping to conclusions. Anecdotal evidence is interesting, it can be used to help guide further medical research, but it should not be taken as a grand sign from above that all the answers have been found.
Let’s deconstruct this question a little bit further. Naturally, as you know, Dercum’s Disease presents with symptoms that are incredibly similar to many other diseases. That’s precisely why the clinical diagnostic process is so vital, in order to rule other potential dangerous diseases out. So let’s take a similar disease – Fibromyalgia – as an example. Both diseases present with chronic, widespread pain with a seemingly unknown, untestable cause. Meaning, oftentimes there’s no concrete abnormal test result doctors can point to for the reason behind either Dercum’s pain or Fibromyalgia pain. There’s no dark spot on an x-ray, no abnormal blood tests. Yet you still have a patient in horrible, widespread, all-over pain.
Secondly, Fibromyalgia is incredibly widely known, as it kind of became the disease du jour of the late 1990’s. Dercum’s Disease, on the other hand, is very rarely known by most medical professionals.
Thus don’t you think the combination of similarity and lack of awareness makes it incredibly likely that doctors could be misdiagnosing Dercum’s patients with Fibromyalgia? That seems a fair assessment. Does that mean we should start extrapolating that everyone who has Fibromyalgia really has Dercum’s Disease? No. Or worse, that Fibromyalgia really is Dercum’s Disease? Absolutely not. Both are giant leaps in logic that have no basis in scientific fact. A decent amount of research has been done into legitimate Fibromyalgia. Its root causes and disease pathways are fairly widely known and yes, they are distinctively different from Dercum’s Disease. The two are not the same, despite presenting similarly in some ways.
The same goes for Lipedema, Lymphedema, et cetera. Do Dercum’s patients sometimes experience swelling caused by inflammation? Yes. Could patients with Dercum’s swelling be misdiagnosed as having Lipedema/Lymphedema? Yes. Could some Dercum’s patients even have a secondary diagnosis of either of those diseases, in addition to their Dercum’s Disease? Absolutely. There are many Dercum’s patients who have also suffered injury or damage to their lymphatic systems, making it very likely they could develop Lymphedema. But again, we know the root causes of both Lipedema and Lymphedema. They are absolutely different and independent disease processes, presenting in radically different fashion when you get down to the nitty gritty details.
Think of it this way. Both a cold and seasonal allergies will make your throat sore and cause coughing fits. That doesn’t mean they have the same root cause or that they can both be treated the same way. Allergies are not an early form of a cold. Neither is Fibromyalgia, Lipedema, Lymphedema, or anything else writ large an early form of Dercum’s Disease.
Dercum’s Disease is a unique and independent disease. But unfortunately it is often either misdiagnosed or undiagnosed. This does not mean, however, that the misdiagnosis is somehow Dercum’s Disease in disguise, or that the other diseases are somehow illegitimate.
Who created and runs the Dercum Society?
In addition to Ms. Lawver, several very kind physicians and researchers have been instrumental in verifying the data provided on this website. The content from our original website (the Dercum’s Disease and Diagnosis sections as seen on the menu above) was all essentially translated (for lack of a better word) from the work of Dr. Håkan Brorson & Dr. Birger Fagher of the University of Malmö, as well as Dr. Francis Dercum’s original published works on the disease. As you will see in our Introduction and throughout those sections, we’ve included as many footnotes as possible to the relevant sections. Our hope, though, is that you will read through the articles as much as you are able.
Throughout the process of “translating” those medical articles, Ms. Lawver was guided by an informal group of doctors from (what was then known as) the National Naval Medical Center in Bethesda, Maryland. That group included specialists in Dermatology, Plastic Surgery, Endocrinology, Interventional Radiology, Psychiatry, and even Alternative Medicine.
Most importantly, Dr. Brorson also very kindly collaborated on the effort to make the medical data from his many peer-reviewed published studies of Dercum’s Disease available translated both into English from the original Swedish, as well as “translated” into layman’s terms. He is not, however, an ongoing contributor.
Ms. Lawver is intensely grateful for the assistance and generosity of the many doctors over the years who have contributed to this website and the cause of raising awareness and understanding of Dercum’s Disease. Our founder readily acknowledges she is not a doctor, but has done her best to bring together the best and brightest doctors to help make medical information more accessible and easy to understand for the sake of Dercum’s patients, their families, and the public at large.
When and why was the Dercum Society created?
Back then, when Heather’s doctors first suggested Dercum’s Disease as a possibility, her first instinct was to google the disease, looking for answers. Much to her dismay, her initial google search provided literally zero results. Upon further digging, she could find only two sources of any information; 1) a single rant published on an Australian blog, lamenting how painful the disease is, and 2) a medical journal article published entirely in Swedish, which turned out to be the work of Dr. Brorson and Dr. Fagher.
Feeling incredibly disheartened and alone, her next thought was that she never wanted anyone else to go through the same experience. She wanted to do everything she could to make sure the next patient who googled “Dercum’s Disease” had a better, more positive, more informative experience. She didn’t want anyone else to feel alone or unable to find answers in such a difficult time.
Thus, despite going through the gut-wrenching process of being diagnosed with a rare and debilitating disease, Heather began work on what would become the first and still the most well-respected Dercum’s Disease website available. Using her prior experience having established an online information and support group for toe amputees, she soon secured the cooperation of the doctors on her own diagnostic team and managed to recruit the world’s leading Dercum’s researcher. Within a few short weeks, The Dercum Society was born. All work was done on a strictly volunteer basis and Heather paid – and continues to pay – for the website’s hosting entirely on her own.
If you’d like to learn more about the Dercum Society, please click here. If you’d like to learn more about Heather, you can do so here.
Do you conduct any research?
Does the Dercum Society solicit for or accept donations?
Who pays for this site and all of its content?
I'd like to contribute, how can I help?
As always, feel free to contact us by clicking here. Your message will go directly to our founder.
But isn't it our duty as Dercum's patients to be guinea pigs so we can speed up medical research?
If anyone ever dares to suggest that you should treat yourself like a guinea pig, or if any doctor ever says anything remotely similar, remove yourself from that situation immediately.
We have seen many times throughout human history what kinds of atrocities are committed when anyone starts to treat their fellow human beings like guinea pigs. One need look no further than the horrific war crimes committed by Nazi doctors in the concentration camps of World War II. No, the Dercum’s community should reject that type of thinking whole heartedly, as should every human being. We vehemently reject it and refuse to associate with anyone who would dare devalue human life so callously. Trust me, future generations will want nothing to do with any so-called research that was brought about because of someone else being devalued and harmed in the process. It’s just not worth it. Every human life is too precious and too valuable to be cast aside as nothing more than a test subject.
Yes, we realize how painful it can be to watch how slow medical research can be. We know how desperate each and every one of us is for answers. But no one should sacrifice their life on the altar of speed! Not only is it senselessly callous, it’s not even efficient. Reckless medical research is never accurate or reliable. Yes, the slower path tests our patience. But the faster past asks too high of a price; our lives. Don’t pay that price, please.
(It breaks our hearts to report, that question is a direct quote from a recent email, and is a paraphrased quote from far too many others. Please, we beg you, as Dercum’s patients we should know better than most just how valuable and fleeting our health can be. Cherish it. Don’t let anyone devalue you in such a horrific way.)
Are you aware of Dercum's patients using altitude chambers for treatment?
Please, to err on the side of caution, do not go into an altitude chamber without first talking to your doctor, potentially getting a second opinion, and very carefully evaluating all of the safety procedures and protocols. If no enriched oxygen is being given, do not allow anyone to artificially take you to altitude. Your life may depend on it. If you happen to have a common mild heart deformity called a Patent Foramen Ovale – a small hole between the ventricles of the heart that many people don’t even know they have – you’re also at an increased risk of having a stroke during drastic changes in altitude. As such, such people aren’t even allowed to go scuba diving for that very reason. Even oxygen pre-treatment, however, doesn’t eliminate the risk. There are many documented cases of divers and fighter pilots still experiencing the bends even with oxygen pre-treatment. Among other horrible things, Decompression Sickness in extreme cases can literally cause sinuses or intestines to burst. Altitude chambers are nothing to take lightly and nothing to play around with.
Keep in mind, altitude chambers are very different from medically therapeutic hyperbaric chambers used in a hospital setting and operated by medical professionals. Those too, however, have major risks. According to the world’s leading medical experts – including Johns Hopkins University Medical Center – hyperbaric oxygen therapy should only be prescribed and operated by properly trained medical professionals. Hyperbaric chambers, just like altitude chambers, artificially alter the pressure on your body and the amount of oxygen you breathe. Both can have lasting effects and carry with them dangerous risks. For instance, when entering a hyperbaric chamber in a hospital, it is vital that you wear only natural fibers and have absolutely nothing on you that could possibly cause a spark, as there is a hugely increased risk of explosion and fire due to the enriched oxygen. Again, it is not a toy and is nothing to be taken lightly.
The added danger with altitude chambers is that they artificially make you feel better afterward by literally depriving your brain of oxygen, inducing a temporary state of euphoria. However, naturally, our brains need oxygen to survive. Decreasing oxygen to the brain can cause lasting, permanent damage. Yet if you’re temporarily feeling euphoric, you can’t even safely judge or realize that you’re putting yourself in danger.
Please, do not take unnecessary risks with your health. If anyone is promoting any treatment outside the scope of a hospital setting, be very, very wary. Always talk to your doctor first before trying anything unusual. Your health – and potentially even your very life – depends on it.
Are you aware of a doctor claiming to be an expert & their research organization?
We also are deeply troubled by and cannot support patterns we’ve seen of charging already desperate people high fees for so-called “conferences”. In our experience, those conferences rarely include anyone other than most ardent supporters and, of course, seem to rely heavily on marketing opportunities for a few select businesses and individuals. We’ve also personally seen and experienced those marketing opportunities clouding the advice given to others, including toward patients that have not been physically examined by the medical professional(s) proffering that advice in an online setting. All of this we find deeply troubling and as such, we can not in good conscience support it. We hope you can understand that and respect our right to hold these opinions.
But that’s just our personal opinion, built over multiple years of experience and initially close cooperation. We do not mention their names out of kindness, but sadly, rarely has that kindness been returned. Unfortunately our founder regularly receives unkind, forceful emails from their supporters, demanding she take the website down and even going so far as to include name-calling and threats of gossip, black-balling, and diminishing her personal reputation. Naturally that gets a little frustrating and tiresome. If we’re all truly in the business of trying to raise awareness and help our fellow Dercum’s patients, why is such behavior necessary or even tolerated?
This is the very first time in our over 10 year history that we have ever addressed this. Again, this is just our opinion. If things change and improve, perhaps that opinion will change.
Of course you are free to support anyone that you choose.