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L i s te n to T h e A B M P Po d c a s t a t a b m m /p o d c a s t s o r w h e reve r yo u a cce s s yo u r favo r i te p o d c a s t s 39 Lipedema has traditionally been called a rare condition, but it is probably much more common than we think. It is hard to estimate its prevalence, because we don't have a widely accepted set of diagnostic criteria, and many doctors are not skilled at recognizing its early signs. We know that lipedema is almost exclusive to women. When it is seen in men, it is often attributed to hormonal imbalances with low testosterone and estrogen dominance. It appears around times of hormonal activity: puberty, pregnancy, and menopause. Some research suggests that up to 10 percent of women who are treated for any kind of lymphatic issues in the legs have lipedema, but other specialists suggest that about 10 percent of women overall may be affected by lipedema, which of course is a much larger number. Lipedema is not the same as obesity, but many patients who have lipedema are also obese by BMI standards. Lipedema is not the same as lymphedema, but many people with advanced lipedema eventually develop lymphedema, and it can be hard to distinguish between them. Lipedema is not Dercum's disease (a genetic disorder involving painful fatty tumors) but overlap between these conditions happens too. All of these comorbidities add to the confusion surrounding this disorder. To understand lipedema, we need to review and possibly update what we understand about fat cells. Fat Cell Review Fat cells, or adipocytes, perform many functions that we are still learning about: they interact with endothelial cells of nearby capillaries; they secrete hormone-like chemicals that impact many metabolic functions; they influence immune system activity; and much more. They are also effective storage tanks for energy from our incoming nutrition (amassed in the form of triglycerides). If a person is underweight, these storage tanks are still present, but they are shriveled and small. If a person is well nourished, their storage tanks are bigger. And if a person is over nourished, then those storage tanks grow in size but usually not in number—or so we thought. It turns out that anyone— not just people prone to lipedema—can accrue new fat cells in adulthood. This typically happens in the lower extremities, and it is not necessarily a bad thing: fat in the calves, thighs, and buttocks (as opposed to the belly) has a protective effect against some diseases. For more fast fat facts, see the video that accompanies this article. WHY IS LIPEDEMA DIFFERENT? The fat that develops with lipedema is different from non- lipedema fat. For most patients, this condition begins with the development of new fat deposits in the legs. These fat cells are embedded in thick connective tissue that appears to have poor quality elastin. Affected tissues become thick, dense, and heavy. Lymphatic flow changes, with the finding of tiny microaneurysms of lymphatic capillaries deep within these fatty deposits. Early observers documented extensive fluid accumulation in the affected areas, but more recently some specialists have questioned that phenomenon. For reasons that are not clear, lipedema fat cells are sequestered from the person's metabolism: diet and exercise habits that lead to the shrinking of normal fat cells do not change the deposits seen with lipedema. Even bariatric surgery and a severe restriction of caloric intake have no effect on the size of the fatty deposits in the legs of people with lipedema. Why does this happen? We don't know. Part of the issue is genetics: some evidence suggests this is an inherited disease. Because the development of symptoms is associated with hormonal shifts, it seems clear there is some kind of estrogen-based influence on the process. Changes in lymphatic vessels are a predictable feature, and some specialists wonder if this might begin a vicious cycle with persistent shifts in circulation between cardiovascular and lymphatic capillaries. "We just have big legs! My mother had big legs, my grandmother had them, and now I have them too!"—Anonymous SIGNS, SYMPTOMS, COMPLICATIONS Most people with lipedema develop fatty deposits in the legs, hips, and buttocks. They are bilateral and symmetrical, and they do not extend into the feet. This causes a distinctive "cuffing" of the ankle. About 30 percent of patients develop deposits in the arms, and it does not If lipedema is as common as some experts suggest, then many massage therapists are probably already working with clients who have it in its early stages.

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