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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.
Signs and symptoms
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, lipo-lymphedema 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 European 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 Germany, for example, that liposuction of inner thigh pads in children can eliminate the loss of mobility in later years.
Liposuction for lipedema
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Current research and clinical practice being done, predominantly in Germany, support surgical intervention with liposuction in some cases of lipedema. Surgeons have been successfully treating lipedema patients with specialized liposuction for over 15 years.[medical citation needed]
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 lipedema with almost no side effects. Dr. Rapprich is based in Darmstadt, Germany and trains doctors worldwide in the techniques he's developed for lipedema.[medical citation needed]
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.[medical citation needed]
Dr. Josef Stutz in Bad Steben, Germany has been treating lipedema for over a decade. He uses a technique called lymph sparing water jet assisted liposuction.[medical citation needed]
Dr. Todd Malan in Scottsdale Arizona has performed WAL liposuction on lipedema since 2007. He is dedicated to the education of physicians and patients regarding options for the effective recognition and treatment of lipedema. He has trained many other American surgeons in this area as well. Malan is dedicated to providing post-op care and follow up to patients in the United States.
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.
The word 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, England and the USA have convened, in part initiated by groups initially only organized through social media.
In 2012, Lipese, LLC published the first co-authored English lipedema handbook entitled: Lipedema: Help, Hope, and Healing written by Maggie McCarey, USA, and Tatjana van der Krabben, the Netherlands,
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.
- 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 lipedema as the abnormal build-up of fat cells in the legs, thighs and buttocks. This national acceptance of lipedema 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 lipedema is a procedure called tumescent liposuction which is now routinely performed in Holland and Germany.
- Lipedema photos and explanation
- Rapprich, Stefan; Anne Dingler, Maurizio Podda (January 2011). "Liposuction is an effective treatment for lipedema – results of a study with 25 patients". JDDG: Journal der Deutschen Dermatologischen Gesellschaft. Volume 9 (Issue 1): 33–40. doi:10.1111/j.1610-0387.2010.07504.x.
- Big Fat Legs a mother/daughter website focused on lipedema description and treatment options
- Lipoedema Simplified: Research, treatment options, and media about lipedema.
- Lipoedema information from Karen Herbst, MD - expert in Fat Disorders
- Lipoedema Ladies - UK Group
- LIPESE blog
- / Talk Lipoedema - UK Group