Lipedema causes fat cells accumulate uncontrollably in the body. When it comes to a disease where most women receive several misdiagnoses (cases in men are extremely rare and only occur in conjunction with other illnesses), the search for a doctor who is familiar with it disease is an odyssey.

This was the case for Claudia Effertz, who, at the age of 30, developed lipedema at the beginning of her pregnancy. She kept visiting different doctors' offices, but none recognized the illness. Most of the time she was advised to lose weight, to eat less, to exercise. There was no shortage of misconceptions.

"I even got wild diagnoses like 'periostitis.' Then after two or three years, I came to terms with the fact that no one could seem to help me," she told DW. "When everyone tells you that there's nothing wrong with you, eventually you believe it yourself."

She tried to push through and not let herself down, and continued to work as a self-employed consultant and business coach.

A long road to the right diagnosis

In 2014, Effertz collapsed with severely elevated blood pressure. Because her mobility was now reduced, her blood pressure was 250 over 180.

"I then went to a rehabilitation center. They also had also a lymphology department there," she said. "They finally made the right diagnosis: Lipedema, stage three on arms and legs, which is the highest stage. That was the first time I had ever heard of it."

That was where Effertz, who is 53, received proper care for the first time.  She was treated with what is known as complex physical decongestive therapy, or CPD. Regular lymphatic drainage is part of it, as well as exercise in water and compression of the arms and legs.

This therapy improves the microcirculation of the blood and stimulates the body's metabolism. This in turn leads to the tissue, which is often hardened by lipedema, being relieved and the pain decreasing, at least temporarily.

It took Effertz 15 years to eventually get the right diagnosis.

Tobias Hirsch from the Hornheide specialist clinic, who is also active in the German Lipedema Society, said that what happened to Effertz is not uncommon. "In a study, we examined when the first symptoms appeared in the female patients. Most said it was during puberty. Then we looked at when they were diagnosed, and that was an average of 20 years later,” he told DW.

Lipedema is a chronic disease

How do you distinguish lipedema from obesity?

"[In lipedema] it is important to emphasize that fat accumulation has nothing to do with obesity," Hirsch said.

In women with lipedema, it's common for the upper part of the body to be slim. Fat deposits appear on the upper and lower legs and on the arms. In the course of the disease, the limbs become increasingly thicker and misshapen. In the worst cases, patients can hardly move. Pain is common.

Sexual activity is almost impossible. For teenagers, dealing with the condition is especially difficult, because they usually have to wear compression stockings to alleviate the discomfort a little.

In addition, patients bruise quickly in the affected regions.

"Hormones are an important trigger. Classic triggers for the disease are puberty, the pill, pregnancy or menopause," Hirsch explained. But hereditary factors also play a role. Often, the mother or grandmother of those affected also had the disease.

Lipedema often triggers other problems

About 70% of patients with lipedema also develop obesity over the course of the disease, even when they still exercised and ate normally at the onset of the disease. Then their arms and legs became more and more misshapen and the patients became more and more immobile as a result.

"Fewer calories are burned, and the patients gain weight, whether they eat little or eat a lot. They get into a vicious circle," said Stefan Rapprich. The dermatologist has specialized in the treatment of lipedema for more than 30 years.

The fat distribution disorder is divided into three stages, depending on how advanced the disease is. "At severity three, the fat distribution is so pronounced that the fat tissue is virtually hanging [down their arms or legs] in lobes," Rapprich said. "The classification is based primarily on the silhouette of the body and does not reflect the actual symptoms the person has. For example, a young woman in stage one may have worse pain than a 60-year-old in stage three."

A widespread disease

Clinicians have only known about lipedema since the 1940s. For decades, the medical community paid little attention to the fat distribution disorder. Only in the last 15 years or so has it come into scientific focus.

Epidemiological studies do not yet exist, meaning it is difficult to know exactly how many women are affected. Estimates put it at around 370 million worldwide. Experts think there are differences in how lipedema manifests around the world.

"In Germany, probably one in ten women suffers from it. In general, Caucasian women in Europe are particularly affected. In Asia, on the other hand, lipedema is not known at all. There is a special form in African women — they tend to develop lipedema in the hip area and above the rump. There it occurs more frequently in the form of painful so-called breech fat," explained Rapprich.

Liposuction is the treatment of choice

Liposuction currently promises the greatest treatment success. Small incisions are made in the affected body region, through which an infiltration solution is injected. This loosens the tissue, allowing fat cells to be extracted and suctioned out via fine cannulas.

Effertz has already undergone four such operations on her legs and buttocks. She said she had severe pain for the first few days, but it quickly subsided.

"When I saw my lower legs after the surgery, I immediately started crying, because I finally had calves without any deformities. With the surgeries, I lost about ten, twelve kilos." After that, she said, she was able to lose more weight — more than 25 kilograms.

Such an operation is usually only performed at an advanced stage of lipedema. By then, however, many women have already developed other diseases like obesity or high blood pressure. The malpositioning of the legs often also causes orthopedic problems.

LipLeg study should provide new insights

The German LipLeg study is currently researching the benefits that early surgery would bring to women. "Final data will probably be available in 2024," Hirsch said. "The study will probably show that patients benefit when liposuction is performed relatively early."

Digital help is also expected to be available soon. In an app called Lipocheck, there is an electronic questionnaire. Using their smartphone, patients take two full-body photos. The app can then use the body silhouette to identify whether is the woman has lipedema and whether further clarification is needed.

"The app is currently still being tested in my practice and will be presented to the public in February or March," said Rapprich.

By then, Effertz will have already undergone another operation. This time, liposuction will be performed on her arms, where she hopes to lose several more kilos of fat, and further improve her quality of life.

This article was originally written in German.