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Lipedema, known as lipoedema in Europe, is a chronic disorder of adipose tissue generally affecting the legs, which causes the legs and sometimes the arms to accumulate fatty tissue. It is distinguishable by six 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; 5) unlike normal fat, lipedematous fat generally cannot be lost through diet and exercise; and 6) a pathognomonic indicator of lipedema is that the feet are spared. Though there is debate about the merits of surgical intervention, there are surgeons in USA, Germany, the Netherlands and the U.K. achieving success with lymphatic-sparing gentle water-jet-assisted liposuction. This is different from conventional liposuction, and is usually performed with tumescent local anesthesia; one of its merits is that this WAL liposuction preserves the integrity of the lymphatic system while removing lipedematous 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 surgery with general 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 simple weight gain. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedematous fat cells and to alert patients to their heightened risk factors so they can take appropriate action.
Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-pubertal female population, with conservative estimates of 17 million women in the US, and 370 million women worldwide affected.
The cause is unknown.
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, a growing number of women 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.
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 the Netherlands, 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,
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 the Netherlands and Germany.