1779 Massachusetts Avenue We also are deeply troubled by and cannot support patterns weve seen of charging already desperate people high fees for so-called conferences. Needless to say, this can be incredibly frustrating and depressing for the unknown number of women and men who are suffering from this seemingly rare and unfamiliar disease. Im curious to know how old some of you are and how long you have had DD. In our experience, its easy to spot the best doctors, because theyll be eager, excited, and willing to learn about new things. We are dedicated to only providing information that can be traced back to peer-reviewed medical journal articles. Dercums Disease presents a wide array of symptoms, which may seem when seen individually somewhat innocuous or common. Meaning youre likely to have a mix of normal, healthy fat, and the uniquely mutated Dercums fat cell. A 41-year-old woman with painful subcutaneous nodules. Secondly, Fibromyalgia is incredibly widely known, as it kind of became the disease du jour of the late 1990s. In most cases, Dercums disease appears to occur spontaneously for no apparent reason (sporadic), though causes of inflammation should be sought. That triad of presentations is complicated enough on its own. She decided to use those skills to attempt to raise awareness, translate medical lingo into widely understandable language, and encourage further research. Weve met several patients over the years who have small lipomas on their right middle finger, right where a pen presses against them when they write by hand. NORD gratefully acknowledges Karen Herbst, PhD, MD, Associate Professor, Departments of Medicine, Pharmacy and Medical Imaging, Division of Endocrinology, University of Arizona College of Medicine, for assistance in the preparation of this report. Science is at the heart of good medicine. Dercums disease is a rare disorder that causes painful growths of fatty tissue called lipomas. Berntorp E, Berntorp K, Brorson H, et al. WebThe Dercum Society was founded by Heather Lawver, herself a sufferer of the disease. Theres 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. An association with bouts of depression, memory or concentration problems, anxiety, and a susceptibility to infection has been noted in some cases. These disorders often have additional symptoms that can distinguish them from Dercums disease. Most of the published clinical research seems to indicate that the disease is more prevalent in women. The report shows the disparity in life expectancy between men and women grew in 2021 from 5.7 years in 2020 to 5.9 years in 2021. NORD strives to open new assistance programs as funding allows. Children rarely get Dercums. That means your bodys immune system is attacking healthy tissues. Mitochondrion 2018; 9:30105. There is a solid reason medical research is conducted using very large numbers of patients compared against similarly large numbers of control groups. Meet The Dercum Society, Of course were always more than happy to help answer questions in any way that we can and we invite you to. Chronic pain is the cardinal symptom and is characterized as aching burning and stabbing. Why? J Intern Med. But as we discuss in both our. Dercum Treatment of pain in adiposis dolorosa (Dercums disease) with intravenous lidocaine: a case report with a 10-year follow-up. In addition to Ms. Lawver, several very kind physicians and researchers have been instrumental in verifying the data provided on this website. Its important to note, individual doctors conducting research do not solicit for donations! Even oxygen pre-treatment, however, doesnt eliminate the risk. 1997;27:1141. Fibromyalgia is a chronic disorder characterized by pain throughout the muscles of the body and abnormally persistent episodes of fatigue. One need look no further than the horrific war crimes committed by Nazi doctors in the concentration camps of World War II. Feeling incredibly disheartened and alone, her next thought was that she never wanted anyone else to go through the same experience. Although Dercums Disease affects both genders, it is twenty times more prevalent among women. Dermarolling, aka microneedling, is the art of erasing unwanted acne scars, wrinkles, and stretch marks. As always, feel free to contact us by clicking here. Dercums disease can be hard to diagnose and treat. If youd like to learn more, visit our. Adiposis Dolorosa (Dercums disease National life tables for many countries are published by the WebThis is a disease that could result, at best, in a lifetime of chronic pain, or at worst in If the liver isnt functioning quite normally, that can then have a domino effect on the kidneys, the bladder, and so on. Treatment is possible and, through education and research, hope can be delivered to those who need it so desperately. Some experts think Dercums may come from a mutated fat gene thats passed down in families. WebWhat are the average life expectancy figures for the most common types of dementia? Dercum's Disease - Rare Diseases - MedHelp Dercum's Disease - Symptoms, Causes, Treatment | NORD As always, we encourage medical professionals to consult both our Articles section and PubMed for additional information. Some affected individuals may also experience weight gain, depression, lethargy, and/or confusion. (Lond) 2017; 41:240-245. That said, in this case, the anecdotal evidence can caution us to be careful about avoiding injury, which in general isnt bad advice anyway. Angiolipomas may be inherited in an autosomal dominant manner. All rights reserved. Again, its absolutely vital to note, this is all anecdotal; individual reports that cant be verified or counted upon to concretely determine a factual root cause. The Benefits of Dermarolling at Home: A Complete Guide, swelling that comes and goes in different parts of the body, often the hands, problems with thinking, concentration, or memory, stiffness after laying down, especially in the morning. Much to her dismay, her initial google search provided literally zero results. So please visit our Articles section, print out a few of them, and take them to your doctor. No. Other treatment is symptomatic and supportive. The Dercum Society See additional information. WebCenters for Disease Control and Prevention. All work was done on a strictly volunteer basis and Heather paid and continues to pay for the websites hosting entirely on her own. Dercums disease. It most often shows up between the ages of 45 and 60. You gain weight disproportionately, but you cant explain why. Children rarely get Dercums. NORD Guide to Rare Disorders. Campen RB, Sang CN, Duncan LM. This is a disease that could result, at best, in a lifetime of chronic pain, or at worst in premature pulmonary failure. Significant weight gain is a common occurrence for most individuals affected by Dercums disease and needs to be treated to avoid progression to pre-diabetes or diabetes. Some individuals with Dercums may experience swelling of various areas of the body, especially the hands, but often one arm or leg may be swollen and therefore more painful. If things change and improve, perhaps that opinion will change. Research Unfortunately, like most answers regarding Dercums Disease, there just hasnt been enough medical research to know for certain. Trauma-induced adiposis dolorosa (Dercums disease). The most current research has been conducted by The University of Malm, The University of Lund, and the National Institutes of Health. Phone: 617-249-7300, Danbury, CT office Frequently Asked Questions, The Dercum Society was founded by Heather Lawver, herself a sufferer of the disease. This roundup covers our top picks for best scar creams, from the best overall to creams for postsurgery, old scars, and fading discoloration. 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 Dercums Disease. Also I would like to know if any of you have flare ups like mine. (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. Instead, your doctor will likely focus on ruling out other possible conditions, such as fibromyalgia or lipedema. Clinical presentation. The Society is an informal gathering of Dercums patients, their families, and doctors, dedicated to making scientific information about the condition more readily available to the general public. That doesnt mean they have the same root cause or that they can both be treated the same way. Decrums disease is an extremely rare disorder. Additional symptoms may occur in individuals with Dercums disease including fatigue, generalized weakness, a tendency to bruise easily, headaches, irritability, and stiffness after resting, especially in the morning, gastrointestinal symptoms, palpitations and shortness of breath. Its root causes and disease pathways are fairly widely known and yes, they are distinctively different from Dercums Disease. Within a few short weeks, The Dercum Society was born. Case report: Infections preceding the development of Dercum disease. A woman with lipedema may also have Dercums disease and obesity. The disease causes significant impairment in quality of life and incapacity 2008; 29:17. Differentiating lipedema and Dercums disease. The Dercum Society was founded by Heather Lawver, a patient suffering from the disease who has extensive experience in advocacy work, writing, and web development. We wouldnt even want to try! The exact cause of Dercums disease is unknown. The content from our original website (the Dercums 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. Hkan Brorson & Dr. Birger Fagher of the University of Malm, as well as Dr. Francis Dercums original published works on the disease. As such, we have worked very hard to ensure that every ounce of data on this website can either be traced directly back to peer-reviewed medical journal data, or is clearly labeled when and if we include anecdotal information. List of Rare Diseases | A-Z Database | NORD Dercum's Disease She programmed and designed this website entirely on her own and wrote the vast majority of the content as well, under the guidance and review of the aforementioned team of doctors and medical researchers. Dercums disease mainly occurs in adults and more women are affected than men. DOI: Hansson E, et al. Learn About Scientific Research, We get a lot of questions from patients and their families. Could some Dercums patients even have a secondary diagnosis of either of those diseases, in addition to their Dercums Disease? Phone: 202-588-5700. Its to avoid the effect of many potential variables that could taint data, as well as to protect against leaping to conclusions. McGevna LF. We also welcome any recommendations, suggestions, ideas, or critiques you have that might help us improve the website or in any way contribute to our mission of raising awareness and making medical information more widely accessible to the general public. Suite 500 MD: The Johns Hopkins University; Entry No:103200; Last Update: 08/05/2016. Even if you are not diagnosed with Dercums or have not suffered from any of its symptoms, your knowledge will help spread awareness of this condition and encourage others to be evaluated. Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. One or more members of a family with familial multiple lipomatosis may go on to develop pain in the lipomas along with additional signs and symptoms consistent with Dercums disease. 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. Many have died after lifetimes of criticism for their obesity, despite their best efforts to moderate their diets and exercise regularly. See how to do it right and avoid side effects. In a country with a population of just over 9 million people, imagine multiplying and extrapolating those 10,000 sufferers out to the 60 million people of the United Kingdom, the 82 million of Germany, or the nearly 296 million citizens of the United States. Average disease duration was 2 years (minimum of a few months and maximum of 9 years). However, in one reported case in the medical literature, the use of high-doses of corticosteroids was linked as a possible cause of the disease. From 2000 to 2010, this disparity had narrowed to 4.8 years, but gradually increased from 2010 to 2019 and is now the largest gap since 1996. 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. We know how desperate each and every one of us is for answers. Consider working with a pain management specialist to find the safest combination thats most effective for you. The pain experience is very individual therefore pain cannot be used as a decisive criterion for a diagnosis of Dercums disease. Phone: 203-744-0100 It's what leads to breakthroughs and what keeps you safe. Washington, DC 20036 Chronic Kidney Disease Life Expectancy by Stage . Lets deconstruct this question a little bit further. Dercum disease occurs in older women, and it causes lots of small benign tumors. Technically speaking, Dercums Disease is classified as a genetic lipid disease. We vehemently reject it and refuse to associate with anyone who would dare devalue human life so callously. Even when dissecting and examining Dercums lipomas under microscopes it can be hard to find and pinpoint these mutated fat cells. The pain associated with these lipomas can often be severe and may be either constant or intermittent 1-3. (2012). Hansson E, Manjer J, Svensson H, Brorson H. Quality-of-life in patients with Dercums disease before and after liposuction. You may also want to see a pain specialist. This could be an internist, dermatologist (skin doctor), or an endocrinologist who treats hormone (gland) problems. Theres no cure yet, but some treatments can ease the symptoms. And yet despite all of this, after a wide array of tests, your doctors cant seem to explain why you have these strange myriad symptoms. More often than not, Dercums patients go through at least a four year period between when they first suspect they may be ill and when theyre finally diagnosed. But naturally, each body is unique and different. Those guidelines are vital for the health and safety of others and cannot be taken lightly. As always, if you can't find the information you need, we're happy to hear from you. Some patients report that ring of tumors traces where the lower band of a bra rests on their body. Just look at sites like The Onion! Dercums Disease (2016). Its even more difficult when the few doctors that do know about Dercums dont know that it can present itself in three very distinct patterns. At the present time, there are no clinical trials recruiting patients for focused 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 Dercums disease before and after liposuction by Dr. Brorson, Dr. Hansson, Dr. Manjer, and Dr. Svensson. 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. Hansson E, Svensson H, Brorson H. Review of Dercums disease and proposal of diagnostic criteria, diagnostic methods, classification and management. But much like all placebo effects, its short lived. This does not mean, however, that the misdiagnosis is somehow Dercums Disease in disguise, or that the other diseases are somehow illegitimate. Webpage 2 Journal of the american osteopathic college of Dermatology AOCD 2902 N. Baltimore St. Kirksville, MO 63501 800-449-2623 FAX: 660-627-2623 www.aocd.org COPYRIGHT AND PERMISSION: Written permission must be obtained from the Journal of However, the pain returned to its prior levels or worse, in some cases exceeded it within two to five years. Again, this is just our opinion. Case records of the Massachusetts General Hospital. Unfortunately we dont have the capacity to keep track of the various doctors throughout the country and the world who are at least familiar with the disease. Yet if youre temporarily feeling euphoric, you cant even safely judge or realize that youre putting yourself in danger. WebDercums = hyperhomocysteinemia & vascular leakage (many causes including EDS-HT) In hyperhomocysteinemia, homocysteine has been shown to store at high multiples in the adipose tissue. 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. Its just not worth it. Trying to offer medical advice online either for free or for a fee (which, incidentally, can be both dangerous and illegal). More research is necessary to determine the long-term safety and effectiveness of interferon alfa-2b as a potential therapy for this disorder. If you have Dercums, the growths of fatty tissue (lipomas) may appear all over your body. Altitude chambers are nothing to take lightly and nothing to play around with. The altered gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. We do not mention their names out of kindness, but sadly, rarely has that kindness been returned. These classifications include: Theres no cure for Dercums disease. One case reported in the medical literature was linked to the use of high-doses of corticosteroids and some cases have been linked to infection including Lyme disease or Valley fever (coccidioidomycosis). Always talk to your doctor first before trying anything unusual. If you would like to learn more about what you can do, please visit our, In our opinion, the biggest problem facing the Dercums community right now is not a lack of research, but rather, a lack of awareness. Tollfree: (800) 411-1222 This disorder usually affects the torso, upper arms, or upper legs. This can include stress, not getting enough sleep, a poor diet, and doing too much or very hard physical activity. WebAbout the prognosis, there is little research done on the natural history of Dercum's disease, but case reports have suggested that pain may be aggravated over time. Increased public awareness will help to save the lives of women everywhere who are suffering in silence. Then the third type is a combination of the two, with both lipomas and painful diffuse fat. The later stage of dementia Furthermore, altitude chambers are known to be exceedingly dangerous. If users are not very carefully monitored and pre-treated with enriched oxygen, the risks are near certain of causing. One case reported the development of Dercums disease in a man after trauma (motor vehicle accident). So just add that to the giant pile of reasons to avoid hurting yourself. All studies receiving U.S. government funding, and some supported by private industry, are posted on this government web site. 2012; 46:252-256. doi: 210.3109/2000656X.2002012.2698417. If youd like to take a look, please, The best person to help you with the chronic, debilitating pain of Dercums Disease is a qualified pain management specialist a doctor trained in the intricate details of treating pain. That seems a fair assessment. No amount of medical research is worth recklessly risking your life. J Am Acad Dermatol. 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. Again, if you cant find answers, youre more than welcome to contact us! Dont let anyone devalue you in such a horrific way.). There is literally zero evidence that it will completely remove the pain caused by Dercums Disease. Ms. Lawver still operates the site today and does her best to update it whenever needed. In the past few years, The National Institutes of Health have started a few research protocols to look into Dercums Disease. Thus dont you think the combination of similarity and lack of awareness makes it incredibly likely that doctors could be misdiagnosing Dercums patients with Fibromyalgia? If youd like to learn more about Heather, you can do so here. Back then, when Heathers doctors first suggested Dercums Disease as a possibility, her first instinct was to google the disease, looking for answers. Reckless medical research is never accurate or reliable. She didnt want anyone else to feel alone or unable to find answers in such a difficult time. The neck and shoulders are usually not affected. All of this we find deeply troubling and as such, we can not in good conscience support it. Medscape. Angiolipomas are known to be painful and hence people with angiolipomas are said to have Dercums disease, angiolipomatosis type. Cannabidiol (CBD) oil, made from cannabis, is sometimes used for chronic pain. Meaning, oftentimes theres no concrete abnormal test result doctors can point to for the reason behind either Dercums pain or Fibromyalgia pain. Adiposis dolorosa (Dercums disease): MRI and ultrasound appearances. This involves taking a small tissue sample and looking at it under a microscope. These include endocrine (hormone) disorders and lipoedema (a buildup of fat in the lower half of the body). Our hope, though, is that you will read through the articles as much as you are able. Dercum disease, also known as adiposis dolorosa, is a rare disorder of Ensuring that patients and caregivers are armed with the tools they need to live their best lives while managing their rare condition is a vital part of NORDs mission. Adiposis Dolorosa (Dercums disease) - Dermatology Advisor Weve also witnessed a fair amount of bullying of those who disagree, as well as an eagerness to exclude any information/data that runs contrary to certain closely held opinions or beliefs of those at the top. So lets take a similar disease Fibromyalgia as an example. There are many Dercums patients who have also suffered injury or damage to their lymphatic systems, making it very likely they could develop Lymphedema. Throughout this site we will examine what peer-reviewed medical data is currently available about Dercums Disease, provide links to peer-reviewed published medical journal articles, offer a glimpse into the Dercums diagnostic process, address several common myths, and do our best to offer advice for simple lifestyle changes that seem to produce some anecdotal improvements in the quality of life of current Dercums patients. WebLife expectancy at birth. Additional reports in the medical literature have linked Dercums disease to a variety of conditions including arthritis, high blood pressure (hypertension), congestive heart failure, sleep disorders, dry eyes, and myxedema, a condition due to an underactive thyroid that is characterized by dry skin, swelling around the lips and nose, mental deterioration and infection. The lipomas can be the size of a pea or as large as a grape, plum or fist. Quincy, MA 02169 Its vitally important that you not attempt to diagnose yourself. Lets break this down bit by bit. 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. To do this, your doctor might biopsy one of your lipomas. 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. Dercum's Disease Campen RB. The trunk, upper arms and upper legs are most often affected. That proverbial language is peer-reviewed medical journal articles. Please be wary, however. Im curious to know how old some of you are and how long you have had DD. Meaning each Dercums patient will have a mix of both healthy, normal fat and mutated Dercums fat. 2005 - 2023 WebMD LLC, an Internet Brands company. It is a rare disease more common in obese postmenopausal women. Frequently Asked Questions, The Dercum Society was founded by Heather Lawver, herself a sufferer of the disease. If the results of the studies in Sweden are any indication, this disease may not be as rare as was once believed. Please, read and discuss what you find here; it will help save a life or two, or perhaps a few million. It is rapidly claiming the livelihoods of countless men and women in the United States alone. Females: 79.3 years. Every human life is too precious and too valuable to be cast aside as nothing more than a test subject. The ultimate goal of IAMRARE is to unite patients and research communities in the improvement of care and drug development. Or worse, that Fibromyalgia really is Dercums Disease? BMJ Case Rep. 2018; :bcr-2017-223869. Theres no standard criteria for diagnosing Dercums disease. Certain case studies and anecdotal reports seem to indicate that some patients believe a small percentage of their tumors seem to coincide with some form of trauma, either blunt force or repeated. The symptoms of Dercums disease can vary from person to person. Herbst KL. Lippincott Williams & Wilkins. Were not doctors and its not ethical to provide medical advice online. Surgical removal and microscopic study (biopsy) of affected tissue confirms that these growths are lipomas. Cherish it. Both can have lasting effects and carry with them dangerous risks. It would require a lot of tissue samples and an unfathomable amount of luck. 2012;7:23. Devillers AC, Orangje AP. If something anything gives you the least amount of pause, please take that very seriously. I have episodes of severe pain that is mostly in one area like it is probably new growth, hot flashes with excessive sweating, cold chills, lowgrade Case 25-2006. Yet you still have a patient in horrible, widespread, all-over pain. Youre told to exercise, but nothing helps. Related Pages. Welcome @iamrare2, I love the username. Finding these uniquely mutated cells is the only current way to clinically confirm a diagnosis of Dercums Disease. Keep in mind, altitude chambers are very different from medically therapeutic hyperbaric chambers used in a hospital setting and operated by medical professionals. The lipomas mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously) but also can be found deeper in the body coupled to muscle, tendons, ligaments or bone by connective tissue. Intravenous administration of the pain reliever lidocaine and/or ketamine may provide temporary relief from pain in some people. NORD is committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, and service programs. Our founder, Ms. Lawver, is happy to pay the small yearly fees for our domain registration and web hosting. Dercum 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.
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