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Lipedema, known as Lipoedema in Europe, is a chronic disorder of the adipose tissue generally affecting the legs, which causes the legs, and sometimes the arms, but not the feet, to accumulate fatty tissue. It is distinguishable by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the seriously underweight to the morbidly obese; 4) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 5) unlike the typical fat of obesity, lipedemic fat generally cannot be lost through diet and exercise. Though there is debate about surgery as an intervention, there are surgeons in Germany, the Netherlands and the U.K. achieving success with medical liposuction. A specialized form of liposuction, usually performed with tumescent local anesthesia, one of the nuances is to ensure integrity of the lymphatic system while removing lipedemic adipose tissue.
Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery, i.e., surgery of the uterus, ovaries, or fallopian tubes or any kind of general surgery with anesthesia. LIpedema can also be triggered by an extremely stressful situation such as a death in the family or a divorce because cortisol levels increase, causing an inflammation cascade, almost always misdiagnosed as weight gain. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.
Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population, with conservative estimates of 17 million women in the US, and 370 million women worldwide affected.
The cause is unknown, although most people with lipedema have a significant hormonal imbalance. In addition, the times of onset or exacerbation coincide with times of hormonal disturbance, puberty, pregnancy and peri-menopause, so seemingly is hormonal in nature.
Patients tend to gain weight in lipedemic areas and lose it in non-lipedemic areas, though there are cases where weight loss has resulted in improvement of the condition. Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up. While lipedema presents itself in various ways, diagnosis is possible as early as pre-puberty when inner thigh pads present and at any age when fat gathers and drapes at knees. Symptoms of lipdemia include disproportionately large, column-like legs, legs unusually large to the knees, disproportinate hips, stomach or buttocks. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Many lipedema patients cannot tolerate the compression garments associated with conventional lymphedema treatment because the underlying lipedemic fat is very painful, and those patients therefore are at risk for the side effects of uncontrolled lymphedema, including recurring blood infections and fibrosis. If not kept in check through a healthy lifestyle the condition can worsen, and patients will become progressively less mobile.
Medical treatment is designed primarily to address the secondary lymphedema part of the lipedema patient’s condition. This treatment includes a course of manual lymphatic drainage and bandaging by a lymphedema therapist, followed by the wearing of custom-fitted compression garments or devices — usually stockings and sometimes biker shorts. Compression prevents recurrence of lymphedema, and in some lipedema patients can reduce the pain of lipedemic fat. There is currently no known uniform medical procedure to cure lipedema. It is, however, successfully managed through a variety of consistently applied techniques to improve the health of the legs and prevent the condition from returning in more difficult to manage levels. Management involves reducing dietary sodium intake, frequent, gentle exercise to promote circulation in the legs, such as rebound exercise, and treatments typical for lymphedema treatment.
Conversely, there is a growing number of woman who claim to have succeeded in reversing lipedema through elimination diets, low impact exercise, and an herbal protocol that addresses inflammation of the legs rather than edema of the legs. This group claims to eliminate inflammatory pain in legs by 1) changing food choices; and, 2) modulating the tumor necrosis factor (TNF) antagonists or TNF blockers in the adipose gland. This movement is gaining recognition in Europe and Australian medical circles.
It should be remembered that lipedema is a childhood disease that progresses throughout adulthood. Early diagnosis is the best treatment. It is now believed in German, for example, that liposuction of inner thigh pads in children can eliminate the loss of mobility in later years.
Current research and clinical practice being done, predominantly in Germany, support surgical intervention with liposuction in some cases of lipoedema. Surgeons have been successfully treating lipoedema patients with specialized liposuction for over 15 years.
Dr. Stefan Rapprich’s treatment consists of liposuction using tumescent local anesthesia with a vibrating micro cannula. The patient is awake and assists during the procedure, and his data suggests that he can remove and prevent the return of lipoedema with almost no side effects. Dr. Rapprich is based in Darmstadt, Germany and trains doctors worldwide in the techniques he’s developed for lipoedema.
Dr. Reggy Schift’s treatment also consists of liposuction using tumescent local anesthesia and also includes use of laser for removal of fibrotic tissue. He is able to reduce lipoedemic fat in large volume, and successfully treats lipolymphedema. He was trained in the US by Dr. Jeffrey Klein M.D., the inventor of tumescence for liposuction and has since developed his own very effective approach in eliminating large volumes of lipoedemic tissue. Dr. Schift is based in Borken, Germany, and treats patients worldwide who travel to Borken for his approach.
Dr. Josef Stutz in Bad Steben, Germany has been treating lipoedema for over a decade. He uses a technique called lymph sparing water jet assisted liposuction.
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Although first identified in the United States, at the Mayo Clinic in 1940, lipedema is barely known in that country – to physicians or to the patients who have the disease. Lipedema often is confused with obesity, and a significant number of patients currently diagnosed as obese are believed to have lipedema, either instead of or in addition to obesity.
Lipedema has multiple spellings. "Lipedema" is the American spelling, while "Lipoedema" is used in Britain and Europe. "Lipodema" is also used occasionally.
In recent years growing awareness of lipedema has come from Internet sources. Conferences in Holland, Germany, and England have also convened. In October 2012 Holland hosted its third conference which included a growing number of medical experts in the field of lipedema. In November, 2012 an English lipedema support forum organized a first annual British Meet and Greet. Notably for lipedema worldwide support, women from America and Australia were also in attendance in Britain. The Australian women had their meet earlier in 2012. The first U.S. mini-conference was held in Santa Barbara, CA in January 2013 with Dr. Karen Herbst and a small group of women with lipedema from Utah, CA, and Massachusetts.
The Northeast region had a week long gathering at Schenctady, NY in May 2013 which included the partners and children of the women present. Canada and Holland were also both represented at this conference. Many of those present at this meeting are members of a global initiative that was established in 2011 called Lipese (an acronymn for Lipedema International Partnership of Entrepreneurs to Support and Educate.) This group encourages and supports all medical and individual efforts to bring awareness of Lipedema to the world through research and education. In 2012, Lipese,LLC published the first co-authored lipedema handbook entitled: Lipedema: Help, Hope, and Healing written by Maggie McCarey, USA, and Tatjana van der Krabben, the Netherlands, with the support and inclusion of many other women from more than a dozen countries and from every continent. van der Krabben, Lipese chairperson, is a well-known advocate of lipedema who is interviewed internationally on radio and in magazines. As a result of the commitment of women globally, a grassroots movement has emerged whose goal is to make people aware that this disease is pandemic.
Notable pioneer women in the field of lipedema: Tilly Smidt, author of the first book on Lipedema entitled Information Book LIpedema." She began the first website on lipedema nearly a decade ago. It includes articles on nutrition, large lady fashion, and current information on obesity. Well known in Germany and Holland, where lipedema has been widely researched and treated, Smidt hosted Lipoedema Lotgenoten Contact Day in March, 2010. Over 200 visitors and 3 guest speakers attended. http://www.tillysmidt.nl
Dr. Karen Herbst the first American doctor to champion lipedema in the states. As one of the few experts in lipedema worldwide, she has tirelessly dedicated herself to seeing patients from all over the country and now has two non-profit organizations to research lipedema. She is appreciated in England, America, and Australia for her determination to help lipedema patients, many of whom never received good medical care before her as few doctors see lipedema women as anything more than non-compliant obese patients.
Jane, the creator of the first blog Big Leg Woman/ a lipedema journal about lipedema in 2006 and first woman to begin an Internet support group. She lives in Maine and has worked hard to pass legislation in that state.
In November 2012 the UK's Health service the NHS first listed Lipoedema as the abnormal build-up of fat cells in the legs, thighs and buttocks. This national acceptance of lipoedema is due largely to The LSN and the administrators and members of Lipoedema Ladies who are an important part of the grassroots movement. The NHS listed the only treatment that appears to be effective for lipoedema is a procedure called tumescent liposuction which is now routinely performed in Holland and Germany.
Lipedema and Lymphedema compared
bigfatlegs.com: the earliest widely read website seeking to inform women of lipedema
"Lipedema," on the web site of Lymphedema Therapy
A Lipedema patient's informative website
Lipoedema Ladies UK