Lipoedema has nothing to do with obesity or poor diet | Knowledge & Environment | DW

In the case of lipoedema, fat cells accumulate uncontrollably in the body. The search for a doctor who is familiar with the disease often turns into an odyssey. Most women – men are only affected in exceptional cases and in connection with other diseases – initially receive one or even several misdiagnoses.

That was also the case with Claudia Effertz. She developed lipedema early in her pregnancy. She was 30 at the time. She kept going to different doctor’s offices, but no one recognized that she was suffering from lipoedema. Most of the time, she was advised to lose weight first, eat less, and exercise. There was no lack of misjudgements.

“I even received such wild diagnoses as ‘periostitis’. After two or three years I came to terms with the fact that apparently nobody can help me. If everyone tells you that you have nothing, then at some point you will believe it yourself.” She tried to persevere, not to let herself down, and continued to work as a freelance consultant and business coach.

It is usually a long way to the right diagnosis

In 2014, Claudia Effertz collapsed with severely elevated blood pressure. Because she could no longer move well, I gave her Blood pressure at the time was 250/180.

“I then went to a rehabilitation center. There was also a department for lymphology there,” she says. “They finally made the right diagnosis: lipoedema, stage three on the arms and legs, i.e. the highest stage. That was the first time I ever heard of it.”

The 53-year-old is receiving appropriate care for the first time and is receiving a so-called complex, physical decongestion therapy, KPE. Regular lymphatic drainage is part of this, as is exercise in the water and compression of the arms and legs. This therapy improves blood microcirculation and stimulates metabolism. This in turn means that the tissue, which is often hardened in lipoedema, is relieved a little and the pain decreases, at least temporarily.

It took Claudia Effertz 15 years to get the right diagnosis. This is far from an isolated case, says Tobias Hirsch from the Hornheide specialist clinic. He’s for them too Lipedema Society active. “In a study, we examined when the first symptoms appeared in the patients. Most said it was during puberty. Then we looked at when the diagnosis was made and that was on average 20 years later,” says Deer.

Lipoedema is a chronic disease

The upper body of the affected women is usually slim, the accumulations of fat occur on the thighs and lower legs and on the arms. As the disease progresses, the limbs become thicker and misshapen. In the worst case, the patients can hardly move. Added to this is pain. They are the main feature that distinguishes lipedema from obesity and also from cellulite. “It’s important to emphasize that fat accumulation has nothing to do with obesity,” says Hirsch.

Sexual activities are hardly possible anymore. Dealing with the disease is extremely difficult, especially for teenagers, because they usually have to wear compression stockings to alleviate the symptoms a little.

In addition, the patients quickly get bruises and bruises in the affected regions. “Hormones are an important trigger. Classic triggers for the disease are puberty, the pill, pregnancy or menopause,” explains Hirsch. But inheritance also plays a role. Often the mother or grandmother of those affected also had to struggle with the disease.

Lipoedema rarely comes alone

Around 70 percent of patients with lipoedema also develop obesity over the course of the disease, although they did sport and ate normally at the beginning of the disease. Nevertheless, their arms and legs became more and more misshapen, making those affected more and more immobile. “Fewer calories are burned, patients gain weight, whether they eat little or a lot. You end up in a vicious circle,” explains Stefan Raprich. The dermatologist has specialized in the treatment of lipedema for over 30 years.

The fat distribution disorder is divided into three stages, depending on how advanced the disease is. “In grade three, the fat tissue distribution is so pronounced that the fat tissue overhangs in lobes,” says Rapprich. “The classification is mainly based on the silhouette of the body and does not reflect the actual symptoms that the person concerned has. For example, a young woman in stage one can have worse pain than a 60-year-old in stage three.”

Lipoedema is widespread

Lipoedema has only been known since the 1940s. For decades, medicine paid little attention to the fat distribution disorder. Only in the last 15 years has it moved somewhat more into the focus of science.

Epidemiological studies are not yet available. So it’s hard to say how many women are actually affected. It is estimated that there are around 370 million worldwide. However, there are ethnic differences.

“In Germany, probably every tenth woman suffers from it. In general, Caucasian, i.e. European women are particularly affected. In Asia, on the other hand, lipoedema is not known at all. African women have a special form. They tend to develop lipoedema in the hip area and above the rump. There it occurs more often in the form of painful, so-called coccyx fat,” explains Rapprich.

Patients usually lose several kilos during liposection to treat lipoedema

Liposuction is the method of choice

Liposuction, i.e. liposuction, currently promises the greatest success in treatment. For this purpose, small incisions are made in the affected body region, through which an infiltration solution is injected. This will loosen up the tissue. The fat cells can then be removed and suctioned out using fine cannulas.

Claudia Effertz has already had four such operations on her legs and buttocks. In the first few days she had severe pain, but that was quickly forgotten. “When I saw my lower legs after the surgery, I immediately started crying because I finally had calves without any deformities. I lost about ten or twelve kilos during the surgeries.” After that, she was able to continue to lose weight. She now weighs over 25 kilograms less.

Such an intervention is usually only carried out at an advanced stage. But then many women have already developed other diseases, such as obesity or high blood pressure. The misalignment of the legs often causes orthopedic problems as well.

The LipLeg study should bring new insights

In the GermanLipLeg study by the Federal Joint Committee research is currently being conducted into the benefits that early surgery would bring to women. “Final data will probably be available in 2024,” says Hirsch. “The study will probably show that patients benefit when liposuction is performed relatively early.”

Digital help will also be available soon. In the App called Lipocheck there is an electronic questionnaire. The patient takes two full-body photos with the smartphone. The app can then use the body silhouette to determine whether it is lipoedema and whether further clarification is necessary. “The app is currently being tested in my practice and should then be presented to the public in February or March,” says Rapprich.

Then Claudia Effertz will already have had another operation. This time a liposuction is to be performed on the arms. She will not only lose several kilos of fat – the surgery should also further improve her quality of life.