Source: Mortality in the United States, 2021 (Figure 1) WebThis is a disease that could result, at best, in a lifetime of chronic pain, or at worst in Men can get Dercums, but women who are obese, middle-aged or have gone through menopause are 20 times more likely to be diagnosed. Trauma-induced adiposis dolorosa (Dercums disease). 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. 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. Dont let anyone devalue you in such a horrific way.). 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. If the liver isnt functioning quite normally, that can then have a domino effect on the kidneys, the bladder, and so on. Because your life may depend on it. 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. WebDercum disease affects women more frequently than men (reportedly 530 times more Autosomal dominant inheritance in adiposis dolorosa (Dercums disease). 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. These classifications include: Theres no cure for Dercums disease. We are dedicated to only providing information that can be traced back to peer-reviewed medical journal articles. Liposuction is not a cure-all for Dercums Disease. We encourage everyone from the average person to all medical professionals to browse through this website and educate themselves about this disease. NORD is committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, and service programs. I read in an article that average life expectancy for DD is 52. But until there is greater, more definitive research on the subject, its impossible to say for certain. March 26, 2020 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. Naturally it can be difficult to keep a constant eye on their progress and any new updates. 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. You may also want to see a pain specialist. Fax: 203-263-9938, Washington, DC Office Metabolic features and regulation of the healing cycle-A new model for chronic disease pathogenesis and treatment. 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. See how to do it right and avoid side effects. Thats what peer-review means. 2006;355:714-722. Again, this is just our opinion. Dercums disease affects females more often than males with medical These include endocrine (hormone) disorders and lipoedema (a buildup of fat in the lower half of the body). You might also find an online or in-person support group for people with rare diseases. Cumulatively, there are more than 7,000 rare diseases affecting more than 30 million Americans. Unlike Dercums disease, the lipomas do not cause pain. The disproportion of a larger lower body compared to the trunk is uniquely classic for lipedema. DOI: Hansson E, et al. As always, feel free to contact us by clicking here. 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. Powered by NORD, the IAMRARE Registry Platform is driving transformative change in the study of rare disease. 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 We do know that there are three distinct presentations of the same underlying disease. In Dercums Disease, not every fat cell is mutated, but any fat cell could be mutated. However, naturally, our brains need oxygen to survive. It's about managing the pain that accompanies her chronic condition and simply getting, Jock itch and related conditions can cause discomfort and itchy, irritated skin. Dark lips are often the result of hyperpigmentation. Tins BJ, Matthews C, Haddaway M, Cassar-Pullicino VN, Lalam R, Singh J, Tyrrell PN. We know how desperate each and every one of us is for answers. Does that mean we should start extrapolating that everyone who has Fibromyalgia really has Dercums Disease? As always, we encourage medical professionals to consult both our Articles section and PubMed for additional information. 55 Kenosia Avenue Cherish it. Many have died after lifetimes of criticism for their obesity, despite their best efforts to moderate their diets and exercise regularly. We choose not to discuss or feature them because in our years of personal experience, interaction, and subsequent opinions formed as a consequence, we have not seen support for a culture of open transparency and healthy debate, nor have we seen a clearly displayed respect for proper scientific medical research guidelines and protocols. Feeling incredibly disheartened and alone, her next thought was that she never wanted anyone else to go through the same experience. 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. Both sexes: 76.4 years. This rule of thumb is doubly important in the Dercums community. Thats a long time to go without answers and we understand how deeply troubling, frustrating, and disheartening that can be! 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. Humangenetik. NORD strives to open new assistance programs as funding allows. There are many Dercums patients who have also suffered injury or damage to their lymphatic systems, making it very likely they could develop Lymphedema. So for instance, if your liver which relies on fat cells to perform its function is operating based on mutated fat cells, youre going to have certain possibly unpredictable consequences. Children rarely get Dercums. To do this, your doctor might biopsy one of your lipomas. Dercums disease was first described in the medical literature in 1882 by an American neurologist named Francis Xavier Dercum. They are absolutely different and independent disease processes, presenting in radically different fashion when you get down to the nitty gritty details. Could patients with Dercums swelling be misdiagnosed as having Lipedema/Lymphedema? If you are a medical professional, a basic understanding of this disease will help your patients who are searching for help and relief from chronic pain. No amount of medical research is worth recklessly risking your life. 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. People with it have many painful, fatty lumps that grow just below their skin. Adult male alcoholics are most often affected, although women and people who do not drink can also develop Madelungs disease. 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. I Hate Being High, but Im Trying Medical Marijuana for My Chronic Pain. Furthermore, altitude chambers are known to be exceedingly dangerous. Yet if youre temporarily feeling euphoric, you cant even safely judge or realize that youre putting yourself in danger. Many people with Dercums disease describe exacerbations or flares of pain that may be accompanied by worsening of symptoms such as fatigue and brain fog. Although theres no cure yet for Dercums, your doctor may suggest treatments to ease your symptoms. This involves taking a small tissue sample and looking at it under a microscope. But thats just our personal opinion, built over multiple years of experience and initially close cooperation. All of this we find deeply troubling and as such, we can not in good conscience support it. The size and number of lipomas varies from person to person. Itd be reasonable for even a perfectly healthy person to avoid hurting themselves, or to remove any potential causes of irritation. Just because someone claims to be working to benefit Dercums does not mean they are qualified or even have your best interests at heart. Furthermore, patients reported higher levels of post-operative pain and many had worse than average surgical complications. Decrums disease is an extremely rare disorder. 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. They can cause severe pain and other symptoms. Dercums disease mainly occurs in adults and more women are affected than men. Back then, when Heathers doctors first suggested Dercums Disease as a possibility, her first instinct was to google the disease, looking for answers. Instead, treatment usually focuses on pain management using: In many cases, people with Dercums disease benefit the most from a combination of these treatments. Unfortunately we feel that we have not seen the same strict standards adhered to with this certain group. 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. Trying to offer medical advice online either for free or for a fee (which, incidentally, can be both dangerous and illegal). According to the worlds leading medical experts including Johns Hopkins University Medical Center hyperbaric oxygen therapy should only be prescribed and operated by properly trained medical professionals. A woman with lipedema may also have Dercums disease and obesity. One patient had a reduction in pain and weight from the use of a manual therapy for the lymphatic system (manual lymphatic drainage therapy) combined with the use of a pain medication called pregabalin. Historically, the associated symptoms in Dercums disease include easy bruisability, sleep disturbances, impared memory, depression, difficulty concentrating, anxiety, diabetes, fatigue, weakness, and joint aches, Anybody can publish whatever they want online. But again, this is all anecdotal. (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. The pain may begin gradually or have a sudden onset. Vatanchi M. Cutaneous Lipomas. Tollfree: (800) 411-1222 He is not, however, an ongoing contributor. (1 and 2 should be present. Lets deconstruct this question a little bit further. 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. There still needs to be more clinical research to know for certain. As such, such people arent even allowed to go scuba diving for that very reason. 2005;4:157-62. Decreasing oxygen to the brain can cause lasting, permanent damage. The reasons arent clear yet. Disturbances in endocrine function and improper breakdown (metabolism) of fat have also been proposed as potentially playing a role the development of the disorder. This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder. It does create symptoms that could fit within the realm of several other disease classifications. So just add that to the giant pile of reasons to avoid hurting yourself. Therefore wed like to caution Dercums 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. Encourage them to also search for additional information on PubMed. 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. Last updated: They may also do tests to rule out other medical issues that share some of the same symptoms. Why? See additional information. Its simply not safe or scientifically valid to do so. Yes, we are. Related Pages. Fibromyalgia is a chronic disorder characterized by pain throughout the muscles of the body and abnormally persistent episodes of fatigue. WebLife expectancy at birth. 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. We do not mention their names out of kindness, but sadly, rarely has that kindness been returned. As always, nothing on this website can take the place of your doctors medical advice and expertise. Take, for instance, the fat cell. Here's what may be causing them and what you can do to ease your symptoms. We also are deeply troubled by and cannot support patterns weve seen of charging already desperate people high fees for so-called conferences. If you have Dercums disease, consider working with a pain management specialist as well as a mental health professional for added support. Connective tissue (fascia) in fat has more pain sensors than muscle, for example, and when tight or inflamed, can cause pain as in fibromyalgia. Dercums Disease presents a wide array of symptoms, which may seem when seen individually somewhat innocuous or common. Case records of the Massachusetts General Hospital. Pain may be caused by lipomas pressing on nearby nerves or inflamed connective tissue, also called fascia, which is commonly associated with the lipomas. The parts of the body most frequently affected are the back of the neck, shoulders, lower back, elbows, hips, and/or knees. The disease causes significant impairment in quality of life and incapacity J Intern Med. Psychotherapy and consultation with pain management specialists may be helpful for enabling affected individuals to cope with long-term intense pain. 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. This does not mean, however, that the misdiagnosis is somehow Dercums Disease in disguise, or that the other diseases are somehow illegitimate. This unique combination of symptoms when put together, paint a seemingly hopeless and inexplicable picture of chronic pain and uncontrollable weight gain. Theres no cure yet, but some treatments can ease the symptoms. Prevention: The Future of Migraine Therapy, VAX-D: Treating Back Pain Without Surgery, Pain in fatty parts of your body that lasts longer than 3 months. WebDercum's disease is considered a chronic condition and can have long-term impacts on The risk is the same for males and females. Its vitally important that you not attempt to diagnose yourself. The trunk, upper arms and upper legs are most often affected. Both are giant leaps in logic that have no basis in scientific fact. Your health and potentially even your very life depends on it. WebWhat are the average life expectancy figures for the most common types of dementia? https://www.clinicaltrialsregister.eu/. They enlarge regardless of diet or exercise, their cellular walls seem to take on a kind of wiggly appearance, they generate a great deal of heat, they sometimes develop two nuclei, and for some unknown reason, the body is unable to break them back down in order to lose weight. Treatment is directed toward the specific symptoms that are apparent in each individual and is primarily focus on easing the characteristic painful episodes. Also I would like to know if any of you have flare ups like mine. Adiposis Dolorosa. 1779 Massachusetts Avenue 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. https://rarediseases.org/living-with-a-rare-disease/find-clinical-trials/, For information about clinical trials sponsored by private sources, contact: Just look at sites like The Onion! Could some Dercums patients even have a secondary diagnosis of either of those diseases, in addition to their Dercums Disease? We hope you can understand that and respect our right to hold these opinions. Even if you havent been diagnosed yet, they can be a great resource. The criteria refer to patients with various forms of advanced pulmonary disease who eventually follow a final common pathway for end stage pulmonary disease. We hope youll take the time to look for your questions here. No, the Dercums community should reject that type of thinking whole heartedly, as should every human being. Subcutaneous Adipose Tissue Diseases: Dercum Disease, Lipedema, Familial Multiple Lipomatosis and Madelung 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. Theres no specific test to check for Dercums. According to a review in the Orphanet Journal of Rare Diseases, Dercums disease is anywhere from 5 to 30 times more common in women. As you will see in our Introduction and throughout those sections, weve included as many footnotes as possible to the relevant sections. Rather, invest your time, your talents, and your communication skills in raising awareness, educating others, and being a positive example of a self-advocating patient. 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. Pain associated with Dercums disease can often be severe. But because its root cause is genetic, thats where its classification lies. The lipomas associated with Dercums disease have more connective tissue than non Dercums disease fat. 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. Herbst KL. The distribution of the lipomas is important in distinguishing Dercums disease from the other disorders involving lipomas. Swelling occurs for no apparent reason, though on imaging, the lymphatic system can be slow to pump in the painful limb compared to the less painful limb, or frank lymphedema may be present. In addition, small specific areas known as tender points are typically painful when pressure is applied to them. It most often shows up between the ages of 45 and 60. Copyright 2023 NORD National Organization for Rare Disorders, Inc. All rights reserved. The exact cause of Dercums disease is unknown. That seems a fair assessment. Attempting to fast forward through the vital clinical diagnostic process for Dercums Disease of carefully ruling out other possible causes. Please, do not take unnecessary risks with your health. Yes. All work was done on a strictly volunteer basis and Heather paid and continues to pay for the websites hosting entirely on her own. Our goal was to translate into laymans terms the information found within the original published work of Dr. Francis Xavier Dercum, as well as Dr. Hkan Brorson & Dr. Birger Faghers landmark multi-year study of the disease, Portrait of a Medical Enigma, published in The Journal of the Swedish Medical Association on April 10, 1996. 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 worlds leading Dercums researcher. If no enriched oxygen is being given, do not allow anyone to artificially take you to altitude. Also I would like to know if any of you have flare ups like mine. This is a disease that was first discovered by Francis Dercum in 1888, and yet so many people are suffering without treatment due to simple and straightforward lack of information. Dercum disease, also known as adiposis dolorosa, is a rare disorder of For more information and to learn more about how research is conducted, please visit our Defining Research section. Intravenous administration of the pain reliever lidocaine and/or ketamine may provide temporary relief from pain in some people. Differentiating lipedema and Dercums 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. This roundup covers our top picks for best scar creams, from the best overall to creams for postsurgery, old scars, and fading discoloration. If were all truly in the business of trying to raise awareness and help our fellow Dercums patients, why is such behavior necessary or even tolerated? Both sexes: 76.4 years; Males: 73.5 years; Females: 79.3 years; Source: Mortality in the United States, 2021 (Figure 1) Within a few short weeks, The Dercum Society was born. Instead, your doctor will ask about your symptoms and do a thorough physical exam. This could be an internist, dermatologist (skin doctor), or an endocrinologist who treats hormone (gland) problems. J Am Acad Dermatol. Meaning, oftentimes theres no concrete abnormal test result doctors can point to for the reason behind either Dercums pain or Fibromyalgia pain. Recently, Li et al (53) have demonstrated that Hyperhomocysteinemia induced by a 4-week oral administration of homocysteine induced insulin resistance in mice. The exact reason for pain associated with Dercums disease is unknown but may occur because the lipomas press on nearby nerves or because the fascia is inflamed.
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