Patients report what it's like to live with lipedema
Deprecating looks and insulting comments because of her figure are part of Brigitte Brühl's everyday life. What many people don't know is that Brigitte Brühl is not simply fat, she has a disease - lipedema. This is a painful disease of the fatty tissue in which fluid accumulates in the tissue. In her case, the thighs are primarily affected. This not only leads to an imbalance on her legs, but she also has to struggle with pain when touching them and a strong feeling of tension. And the mass she carries around due to her illness restricts her in her everyday life. Getting dressed is very strenuous for Brigitte Brühl - especially socks and pants. If the floor is too slippery, she needs an extra mat to keep from slipping away.
"The unreported number of people suffering from lipedema in Germany is large," reports Dr. Petra Scheffer, chief physician for plastic, reconstructive and aesthetic surgery/hand surgery at the Hellersen Sports Clinic. There is no such thing as screening, she said. "Even if you were to take samples of the fat, you can't really detect the disease," the doctor explains. One important sign, she says, is pain. Some patients remain in the first stage of the disease, where no serious skin change is yet visible, but still experience extreme pain from pressure or touch. This is because the stage only shows the degree of skin change and not the pain. External symptoms may include symmetrical swelling, unusual proportions, hardened subcutaneous tissue, a strong tendency to hematoma, and fat proliferation. Changes occur insidiously.
Dr. Scheffer has many patients - primarily women - with this condition. Not only is it noticeable that there is a lack of acceptance among the population, but in the past the case was almost always the same: health insurance pays for compression garments and lymphatic drainage, but only in rare cases for surgical treatment. Often only in the third stage and also only under certain conditions. As bizarre as it sounds, Brigitte Brühl was lucky to be in the third stage of the disease and that liposuction was unavoidable at the same time for a necessary knee surgery. Removing the abnormal fatty tissue does not make lipedema disappear completely, but it does reduce the pain.
"The first signs of the disease were already there in my childhood - I always had wide legs and a wide butt, although I was otherwise slim. At that time, however, people didn't know anything about lipedema," Brigitte Brühl explains. During puberty it became more extreme, until it finally "exploded" with pregnancy, she describes. Her weight increased from 78 to 126 kilograms. "It is suspected that lipedema is hormonal, for example due to changes during puberty, pregnancy or menopause," explains Dr. Petra Scheffer. "No one's alarm bells rang at the time. On the contrary, I got to hear comments like: You shouldn't eat so much," Brigitte Brühl recalls. She is glad that she has a strong personality. Many others do not feel the same way, she says, and are undergoing psychological treatment as a result of the accusations.
The diagnosis of lipedema came rather by chance 20 years ago. "I went to a physical therapist with back problems. She brought it to my attention and advised me to have myself examined by a doctor. That's when it was determined that there was a lot to be said for it," says Brigitte Brühl. Treatment with lymphatic drainage and compression pants began. Nevertheless, the disease worsened over the years. She is glad to finally experience an improvement through liposuction, which at the same time means a relief for everyday life.
However, liposuction or weight loss does not mean the solution to all problems, as the example of another patient, Yvonne Kohles, shows. She, too, was diagnosed with lipedema by chance. With a lot of discipline and ambition, she managed to lose 64 kilograms on her own - even before the diagnosis - over a period of several years. With the weight loss, the pain reduced, although it never completely disappeared. "It's like someone is poking or pinching with a nail, and when the skin is touched, it's an unpleasant feeling," Yvonne Kohles describes. What remained, however, despite dwindling kilos, was a large amount of excess skin that now causes her problems. "My belly button has already become inflamed several times and, especially in summer, my legs rub against each other because of the mass of skin. But most of all, I have chest pain when I exercise, and the excess skin prevents me from doing some sports exercises," the patient reports. Nevertheless, her health insurance company refused to cover the costs of a tightening operation. She had no other choice but to bear the costs herself in order to be freed from the pain and restriction so that she could live normally.
The consequences of lipedema
The consequences of lipedema are many. For example, the accumulation of water in the pathologically altered fatty tissue can increase, so that the connective tissue septa around the fat harden and drainage obstructions of the general lymphatic channels occur. This in turn can lead to the development of lymphedema. In addition, movement disorders may occur, which are generally associated with weight gain, or leg axis malpositions may develop.
What are the treatment options?
Treatment options include compression garments, lymphatic drainage to Complex Physical Decongestive Therapies (CPD) to reduce water retention and decrease pain. Paying attention to a healthy body weight is also important, which is why nutritional counseling is necessary for many patients. An additional therapy is liposuction to remove the abnormal fatty tissue. In the past, however, health insurance companies only covered the costs for this in rare cases. The Federal Joint Committee had set the following criteria for cost coverage for September 2019 until Dec. 31, 2024: The disease must have reached the third stage, a six-month conservative therapy has not brought relief and the BMI must not exceed 35 for liposuction. Regarding the assumption of costs for liposuction, however, something could soon change for the better for patients. With a decision of the Federal Social Court (BSG) from the end of March this year, the previous case law was somewhat corrected.
Is prevention possible?
The disease can be somewhat prevented with sports, as the muscles improve blood circulation. In addition, those affected should not use a fascia roll, as this forces the inflammatory process. It is especially important not to become obese, because with increasing weight, the pressure on the diseased fat cells increases, which in turn triggers pain. Conversely, pain has been shown to improve with weight loss. However, they do not disappear completely.
Skin tightening
In some cases, follow-up surgery - tightening surgery - is necessary to remove the excess skin caused by liposuction. In this case, it is also often difficult for health insurance to cover the costs, although skin tightening is not only for aesthetic reasons. When the skin laps on each other, wrinkles appear, where fungus can form. In addition, the mass of skin restricts movement and causes pain.
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