Sunniva had tried every diet – but with little success
Lipoedema is a painful chronic disease primarily affecting women. It can take years for patients to be diagnosed with the disease, which adds to suffering as women try unsuccessfully to lose weight
image: "After I was diagnosed, I became kinder to myself. I know that it is not my fault that my body is the way it is. But I often hear from both society and the health service that women like me are just fat and lazy, and that we need to toughen up, says Sunniva Kwapen. She did not participate in the Norwegian University of Science and Technology study, and has tried a low-carb diet before, but has concluded that a completely normal Norwegian diet is best.
Credit: Photo: Aleksander Stokke Båtnes
It all started when she was in lower secondary school.
Her thighs, calves and upper arms suddenly began to grow, and she could not understand why it was so painful. It was not until she was over 40 years old that Sunniva Kwapeng was diagnosed with lipoedema.
However, before the correct diagnosis was made, she tried all sorts of diets – with little success.
A recent at the Norwegian University of Science and Technology (NTNU) study shows that her experience is quite typical. It is unlikely that the body fat associated with lipoedema can be lost through dieting.
Limited knowledge
Lipoedema is a poorly understood disease that primarily affects women.
The disease is characterized by disproportionate and excess fatty tissue on the thighs and calves, and sometimes on the arms, while the hands and feet remain unaffected.
“Despite this being a disease that affects many women, little is known about it, which is rather thought-provoking,” said Julianne Lundanes, who recently was awarded a PhD from NTNU.
Her doctoral thesis was on on the relationship between two different diets and their effects on pain, quality of life, body weight and composition, appetite and inflammation in patients with lipoedema.
Some people also become obese
Lipoedema is painful. It can be painful to move, and it is easy to get caught up in a vicious cycle of inactivity and reduced quality of life. Lipoedema is often mistaken for obesity, but they are two distinct conditions.
If a person with lipoedema loses weight, it is common to see normal fat disappear, such as on the stomach, while the calves and thighs remain the same size. In obesity, fat can be stored all over the body, both under the skin and around the internal organs.
In lipoedema, the accumulation of fatty tissue occurs mainly under the skin on the hips, thighs, calves and arms.
The pain can have a significant impact on quality of life, making movement difficult.
“We don’t know why the disease is so painful. We believe it involves an inflammatory condition in the fat, and that this is what causes the pain,” said Lundanes.
Lipoedema is often hereditary
There are currently no Norwegian national guidelines for the treatment or follow-up of women with lipoedema.
“We also don’t know much about why some women develop lipoedema, except that it appears to be hereditary. It is often the case that several people in the same family are affected by it. The disease often manifests during hormonal changes such as puberty, pregnancy and the menopause,” said Lundanes.
The aim of her study was to determine whether a low-carbohydrate diet could serve as an alternative form of treatment for patients with the disease. Her study relied on a sample of 70 women with lipoedema aged 19–73 years old which was divided into two groups.
One group followed a low-carb diet, while the other followed a low-fat diet. Both groups ate the same number of calories each day, but the amount of carbohydrates and fat varied.
The participants received weekly follow-up for eight weeks and were tested at the beginning and end of the study. Pain and quality of life were measured through a questionnaire.
The results showed clear differences between the two groups.
Similar degrees of inflammation
“The women in the low-carb group had less pain. The participants in the other group did not experience any change in pain, but both groups reported better quality of life,” said Lundanes.
Tests were also carried out to see if the reduction in pain was due to the low-carb diet leading to less inflammation in the body. This turned out not to be the case.
“There was no difference in changes in inflammation between the two groups. We also measured inflammation through blood tests, so inflammation in the fatty tissue itself still needs to be investigated in order to draw any conclusions,” explained Lundanes.
Greater weight loss on the low-carb diet
The women who followed the low-carb diet lost more weight than those who followed the low-fat diet.
“At the end of the study, we found that the women who ate fewer carbohydrates were less hungry than the other group. The feeling of being less hungry is a well-known benefit of low-carb diets once ketosis is achieved. This may have helped these women lose more weight than the other group,” explained Lundanes.
There is no treatment that can eliminate the causes and cure lipoedema. There's only treatment that can alleviate some of the symptoms.
Liposuction is one of these options, but it is currently only offered as part of a research study at Haraldsplass Hospital in Bergen. The only other alternative in Norway is to pay for private surgery, and that can cost hundreds of thousands of Norwegian kroner.
“The long-term effects of lipoedema liposuction have still not been fully investigated. There is a lack of research in this area too,” added Lundanes.
Compressing the Fat – Reduces Pain
Most people in Norway currently receive help in the form of physical therapy and compression garments that squeeze and support the fatty tissue.
"Compression garments give many people relief," says Lundanes.
For Kwapeng, compression garments have been a great help in managing the pain.
"I’ve also lost many centimeters on my legs because of the compression garments. My expenses for compression are covered, but in other parts of the country, they’re not. It’s completely random what kind of help you get," says Kwapeng.
At home, she has a machine that’s also used by patients with other conditions. The machine is called a pulsator and is a vacuum treatment for the lymphatic vessels designed to activate the lymphatic system. Lymphatic drainage initiates several cleansing processes in the body and can help improve blood circulation.
The machine is like a giant pair of pants, used while lying down.
"It works really well for me. It takes away the pain. I also get more energy. If I have low energy and lie down in it, it’s like my body wakes up," says Kwapeng.
Over time, she has learned to live with the disease.
"It’s frustrating to have a condition that there is so little knowledge about. A doctor once told me that at least I won’t die from having lipoedema — but I die a little every time I can’t sit on the floor with my daughter. I die a little every time I can’t go on a hike I want to take because of the pain. And I die a little every time people think I’m just fat and lazy," says Kwapeng.
Source:
Julianne Lundanes, Dietary management of lipedema – Comparing the effect of a low-energy, low-carbohydrate diet versus an isocaloric low-fat diet on pain, quality of life, body weight and composition, inflammation, and appetite, NTNU Open, 24.03.2025.