Painful fat distribution disorder is often recognized too late. And there is no way to get rid of lipedema with diet or exercise. Around 370 million women are affected worldwide.
Lipedema or lipoedema is a disease in which fat cells accumulate uncontrollably in the body. Finding a doctor who knows the disease is often an odyssey. In most cases, women receive a first or even several misdiagnoses.
This was also the case with Claudia Effertz. She developed lipedema early in her pregnancy when she was in her 30s. She kept going to different doctors offices, but no one recognized that it was lipedema. Very often she was advised to lose weight, eat less, exercise. There was no shortage of misdiagnoses.
“I also received absurd diagnoses such as ‘inflammation of the outer membrane of the bone’. After two or three years I resigned myself to the fact that no one could help me. When everyone tells you that you have nothing, in the end you believe it yourself”. He tried to establish himself, not let himself down, and continued to work as a freelance consultant.
Long way to the correct diagnosis
In 2014, Claudia Effertz collapsed, her blood pressure was severely elevated. Because she could no longer move properly, her blood pressure at the time was 25 out of 18.
“I was then referred to a rehabilitation center, which also had a lymphology department,” she says. “And finally they made the correct diagnosis: lipedema, stage 3 in the arms and legs, which is the most advanced stage. It was the first time I heard about it.”
Today, at the age of 53, he receives adequate care for the first time, with complete physical decongestant therapy. This includes regular lymphatic drainage, water exercises and compression of the arms and legs. This therapy improves blood microcirculation and stimulates the metabolism. This, in turn, allows the tissue, often hardened in lipedema, to be somewhat relieved and the pain to subside, at least temporarily.
It took Claudia Effertz 15 years to get the correct diagnosis. “This is not an isolated case,” says Tobias Hirsch, of the Hornheide specialist clinic in Germany and who is a member of the Lipidemia Society. “In one study, we looked at when the first symptoms appeared in patients. Most said it was during puberty. Then we looked at when the diagnosis was made and that it was an average of 20 years later,” she points out.
Chronic disease
The affected female upper body is usually lean, and fat deposits develop on the upper and lower legs and arms. As the disease progresses, the limbs become thicker and more deformed.
In the worst case, patients can barely move. Also, there’s the pain. This is the main feature that distinguishes lipedema from obesity as well as from cellulite. “Importantly, fat accumulation has nothing to do with obesity,” says Hirsch.
Sexual activities become almost impossible. Coping with the condition is extremely difficult, especially for teenagers, as they often have to wear compression stockings to ease some of the discomfort.
Also, patients quickly get bruises and blackheads in the affected regions. “Hormones are an important stimulator. The classic triggers of the disease are puberty, the pill, pregnancy or menopause,” explains Hirsch. But hereditary factors also play a role. Often the patient’s mother or grandmother also had the disease.
Lipedema rarely comes alone
About 70% of patients with lipedema also develop obesity during the course of the disease, although they continue to exercise and eat normally at the onset of the disease. However, his arms and legs have become increasingly deformed and this further limits his mobility. “Fewer calories are burned and patients gain weight, whether they eat little or a lot. You enter a vicious circle,” explains Stefan Rapprich, a dermatologist who has specialized in the treatment of lipedema for more than 30 years.
The fat distribution disorder is divided into three stages, depending on the progression of the disease. “At level 3, the fat tissue distribution is so pronounced that it practically bulges in layers,” says Rapprich. “The classification is mainly based on the body silhouette and does not reflect the actual symptoms the person has.” For example, a young woman in stage 1 may have worse pain than a 60-year-old woman in stage 3.
Only 15 years in the sights of science
Lipoedema has only been known since 1940. For decades, medicine paid little attention to the disorder of fat distribution. And only in the last 15 years has it come into the crosshairs of science.
There are no epidemiological studies yet. It is therefore difficult to say how many women are actually affected. Estimates indicate around 370 million worldwide. However, there are ethnic differences.
“In Germany, probably one in ten women suffers from the disease. Typically the most affected are Caucasians, i.e. European women. In Asia, however, lipedema is not known. they tend to develop lipedema in the hip area and above the tailbone, where it most often presents as painful fat,” Rapprich explains.
Liposuction is one treatment option
Liposuction currently promises the most successful treatment. For this, small incisions are made in the affected area of the body, where an infiltration solution is injected to loosen the tissue. The fat cells can then be extracted and aspirated through fine cannulas.
Claudia Effertz has already undergone four such operations on her legs and buttocks. She says she had severe pain in the first few days but that was soon forgotten. “When I saw my legs after the liposuction, I immediately started crying because I finally had calves without any deformities. I lost about 10, 12 kilos during the procedures.” And then she continued to lose weight. More than 25 kilos have passed so far.
Liposuction is usually only performed at an advanced stage. By then, however, many women have already developed other diseases, such as obesity or high blood pressure. Incorrect leg positioning also often causes orthopedic problems.
Study in progress
The GermanLipLeg study, linked to a group of German public health agencies, is investigating the benefits of early surgery for women. “The final data will likely be available in 2024,” Hirsch says. “The study could show that patients benefit when liposuction is performed relatively early.”
Digital help for the problem should also be available soon. In the application called Lipocheck there is an electronic questionnaire. The patient takes two full-body photos with her smartphone. The app can then use the body silhouette to identify if the person has lipedema and if further clarification is needed. “The app is still being tested in my office and will be released to the public in February or March,” Rapprich says.
By then, Claudia Effertz will have already undergone another operation. This time she will have liposuction on her arms. Not only is she hoping to lose several pounds of fat, but the operation is expected to further improve her quality of life.
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