Yes. Case report: Infections preceding the development of Dercum disease. If youd like to learn more, visit our. Autosomal dominant inheritance in adiposis dolorosa (Dercums disease). Theyll show up most often on your torso (trunk), upper arms and upper legs. Unfortunately, given how rare and relatively unknown the disease is, this is a huge impediment to accurate diagnosis. Knowing when symptoms began to appear can help medical providers find the correct diagnosis. Because certain systems of the body rely on fat cells to function properly, its understandable that a collection of mutated fat cells could alter however slightly those bodily systems. Baltimore. Weve encountered some patients who have gone as long as ten to fifteen years! Symptoms of the following disorders can be similar to those of Dercums disease. WebCenters for Disease Control and Prevention. More research is necessary to determine the long-term safety and effectiveness of interferon alfa-2b as a potential therapy for this disorder. 1999;24:240-241. 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 symptoms from some diseases may begin at any age. Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. As always, we encourage medical professionals to consult both our Articles section and PubMed for additional information. 2008; 29:17. Some experts think Dercums may come from a mutated fat gene thats passed down in families. 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. 1779 Massachusetts Avenue Dercum disease occurs in older women, and it causes lots of small benign tumors. The lumps can cause weakness and severe pain as they press on nearby nerves. A decent amount of research has been done into legitimate Fibromyalgia. Int J Obes. To do this, your doctor might biopsy one of your lipomas. But unless you are a doctor, its impossible to diagnose yourself and doing so can only be an impediment to an accurate diagnosis. They can cause severe pain and other symptoms. The declines in life expectancy since 2019 are largely driven by the For more information and to learn more about how research is conducted, please visit our Defining Research section. We do know that there are three distinct presentations of the same underlying disease. The most commonly known form of the disease is the one that seems to more readily affect women, therefore it seems logical to assume that theres some diagnostic bias possibly going on. The characteristic finding of Dercums disease is the formation of multiple, painful growths consisting of fatty tissue (lipomas) that are found just below the surface of the skin but also deep. Herbst KLH. WebThe age symptoms may begin to appear differs between diseases. She didnt want anyone else to feel alone or unable to find answers in such a difficult time. Some cases of Dercums disease have run in families and several reports in the medical literature cite the possibility that the disorder may be inherited as an autosomal dominant trait in these cases (FML type or angiolipomatosis type). Because of that and the fact that each Dercums 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. In order to get answers for you as quickly as possible, we've compiled a page filled with the most vital information to satisfy your most urgent questions. In our experience, its easy to spot the best doctors, because theyll be eager, excited, and willing to learn about new things. You gain weight disproportionately, but you cant explain why. If something anything gives you the least amount of pause, please take that very seriously. There really isnt too much we need. All rights reserved. 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. Interferon alfa-2b induced long-term relief in two patients with adiposis dolorosa and chronic hepatitis C. J Hepatol. Some affected individuals may also experience weight gain, depression, lethargy, and/or confusion. No, the Dercums community should reject that type of thinking whole heartedly, as should every human being. https://www.clinicaltrialsregister.eu/. Please, trust your gut. 2006;355:714-722. Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother. Instead, your doctor will ask about your symptoms and do a thorough physical exam. They are absolutely different and independent disease processes, presenting in radically different fashion when you get down to the nitty gritty details. As such, legitimate medical research is performed under the auspices of large organizations and/or respected medical schools. You seem susceptible to infection, you bruise easily. Your doctor can also tell you what might make your symptoms worse. Lipomas in people with Dercums disease may be found in any part of the body, although they are rare in the head, neck, hands and feet. I read in an article that average life expectancy for DD is 52. The exact cause of Dercums disease is unknown. 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. Metabolic features and regulation of the healing cycle-A new model for chronic disease pathogenesis and treatment. If the liver isnt functioning quite normally, that can then have a domino effect on the kidneys, the bladder, and so on. There are many Dercums patients who have also suffered injury or damage to their lymphatic systems, making it very likely they could develop Lymphedema. Encourage them to also search for additional information on PubMed. Phone: 203-744-0100 Surgical excision of lipomas may temporarily relieve symptoms although the generation of inflammation (part of the healing process) during and after the surgery may induce more lipomas to develop in that area. It most often shows up between the ages of 45 and 60. Others believe its an autoimmune disorder. The upper limb was affected first in 39 cases, the lower limb in 14 cases, both upper and lower limbs in 11 cases and bulbar onset in 21 cases. Madelungs disease, also known as multiple symmetric lipomatosis, is a rare disorder affecting uncoupling protein-1 and possibly brown fat tissue. Anybody can publish whatever they want online. If the results of the studies in Sweden are any indication, this disease may not be as rare as was once believed. Alternative approaches including acupuncture, hypnosis, biofeedback, and cognitive behavior therapy have also been tried for individuals with Dercums disease. 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. Naviaux RK. 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 Dercums patients, their families, and the public at large. Dercums disease affects females more often than males with medical All work was done on a strictly volunteer basis and Heather paid and continues to pay for the websites hosting entirely on her own. Unfortunately, like most answers regarding Dercums Disease, there just hasnt been enough medical research to know for certain. 2005 - 2023 WebMD LLC, an Internet Brands company. Its simply not safe or scientifically valid to do so. 1 1 Hansson E, Svensson H, Brorson H. Review of Dercum's disease and proposal of diagnostic criteria, diagnostic methods, classification and management. Your diet doesnt seem to affect your size. Back then, when Heathers doctors first suggested Dercums Disease as a possibility, her first instinct was to google the disease, looking for answers. Vatanchi M. Cutaneous Lipomas. Dark lips are often the result of hyperpigmentation. We do not mention their names out of kindness, but sadly, rarely has that kindness been returned. Herbst KL. The exact cause of Dercums disease is unknown. The pain experience is very individual therefore pain cannot be used as a decisive criterion for a diagnosis of Dercums disease. The risks are too steep. This is the very first time in our over 10 year history that we have ever addressed this. However, almost all people with Dercums disease have painful lipomas that grow slowly. Males: 73.5 years. No, we never have and we certainly dont plan to. Dominant genetic disorders occur when only a single copy of an altered gene is necessary for the appearance of the disease. Although an extremely rare occurrence, it has been reported in children. She wanted to do everything she could to make sure the next patient who googled Dercums Disease had a better, more positive, more informative experience. Among other horrible things, Decompression Sickness in extreme cases can literally cause sinuses or intestines to burst. Its also incredibly risky and potentially causes a considerable amount of damage to the lymphatic system, which can lead to potential complications down the road. It's what leads to breakthroughs and what keeps you safe. 1998;243:197-201. Also I would like to know if any of you have flare ups like mine. Why? No human being deserves to be treated like a guinea pig. Dont pay that price, please. The pain associated with these lipomas can often be severe and may be either constant or intermittent 1-3. Youre told to exercise, but nothing helps. Unlike Dercums disease, the lipomas do not cause pain. Dercum disease is often associated with generalized weakness, depression, and irritability. Not accepting or cooperating with medical insurance. 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. The disproportion of a larger lower body compared to the trunk is uniquely classic for lipedema. Meaning youre likely to have a mix of normal, healthy fat, and the uniquely mutated Dercums fat cell. Im curious to know how old some of you are and how long you have had DD. 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. Not only is it senselessly callous, its not even efficient. Your message will go directly to our founder. McKusick VA. ed. Adult male alcoholics are most often affected, although women and people who do not drink can also develop Madelungs disease. We encourage everyone from the average person to all medical professionals to browse through this website and educate themselves about this disease. So lets take a similar disease Fibromyalgia as an example. The distribution of the lipomas is important in distinguishing Dercums disease from the other disorders involving lipomas. We want to make it clear, we are not selling anything, we do not accept donations, and we constantly strive to ensure that all information provided on this website is based on published, peer-reviewed, scientifically tested medical data. Weve done our best to try to facilitate the work of other researchers as best we can over the years, but thats really the best we can do. As such, most doctors no longer recommend liposuction for Dercums patients as a means of treating pain. 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. Clin Exp Dermatol. Science is at the heart of good medicine. If you suspect you may have Dercums Disease, there are two very important things you must do. That triad of presentations is complicated enough on its own. Again, if you cant find answers, youre more than welcome to contact us! You feel tired, you ache constantly, yet nothing seems to relieve your pain and exhaustion. Medscape Updated: Dec 15, 2017. Please, do your research and always insist on science-based medical information. Absolutely. DOI: Debra Sullivan, Ph.D., MSN, R.N., CNE, COI, rarediseases.org/rare-diseases/dercums-disease/, fat-disorders-2017.squarespace.com/dercums/, mayoclinic.org/diseases-conditions/lipoma/symptoms-causes/syc-20374470, 12 Things Only Someone with Chronic Pain Would Understand. Weve endeavored to make the best peer-reviewed medical data available to patients and their families in easily understood, accessible language. www.centerwatch.com, For information about clinical trials conducted in Europe, contact: Our website services, content, and products are for informational purposes only. Hansson E, Manjer J, Svensson H, Brorson H. Quality-of-life in patients with Dercums disease before and after liposuction. This roundup covers our top picks for best scar creams, from the best overall to creams for postsurgery, old scars, and fading discoloration. Dercums Disease presents a wide array of symptoms, which may seem when seen individually somewhat innocuous or common. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. No. Even oxygen pre-treatment, however, doesnt eliminate the risk. Altitude chambers are nothing to take lightly and nothing to play around with. Science is at the heart of good medicine. Saving Lives, Protecting People Life Expectancy. They may also use a CT scan or MRI scan to help them make a diagnosis. Lange U, Oelzner P, Uhlemann C. Dercums disease (Lipomatosis dolorosa): successful therapy with pregabalin and manual lymphatic drainage and a current overview. Also I would like to know if any of you have flare ups like mine. The ultimate goal of IAMRARE is to unite patients and research communities in the improvement of care and drug development. Chronic pain is the cardinal symptom and is characterized as aching burning and stabbing. What Causes White Spots to Form on Your Nipple? The same goes for Lipedema, Lymphedema, et cetera. Using CBD Oil for Pain Management: Does It Work? (2012). It does create symptoms that could fit within the realm of several other disease classifications. Symptoms may begin in a single age range, or during several age ranges. Both diseases present with chronic, widespread pain with a seemingly unknown, untestable cause. So just add that to the giant pile of reasons to avoid hurting yourself. That proverbial language is peer-reviewed medical journal articles. Orphanet J Rare Some researchers think it may by an autoimmune disorder, which is a condition that causes your immune system to mistakenly attack healthy tissue. We know how desperate each and every one of us is for answers. The neck and shoulders are usually not affected. Pain associated with Dercums disease can often be severe. However we have compiled a list of small, simple lifestyle changes weve noticed have been helpful to a multitude of patients over the ten plus years weve been interacting with and helping Dercums patients. That means your bodys immune system is attacking healthy tissues. Dercums disease is a rare disorder that causes painful growths of fatty tissue called lipomas. Anecdotal information is used sparingly and will always be clearly identified. MD: The Johns Hopkins University; Entry No:103200; Last Update: 08/05/2016. We're celebrating 40 years of rare disease advocacy. 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. White spots on your nipples are usually harmless. (2016). Our hope, though, is that you will read through the articles as much as you are able. Familial multiple lipomatosis is inherited in an autosomal dominant pattern.