Many interested in learning more about hidden women’s disease

"Fat is not just fat” was the title of the second lecture in the JU-LIVE series organized at Jönköping University together with Folkuniversitetet. On Thursday, 28 September, the audience in the packed JMW hall at the University Library got to take part in research on the hidden female disease lipedema and listen to a touching story about what it is like to live with the disease.

Johanna Falck is a PhD student at the School of Health and Welfare at Jönköping University and her research is on lipedema, a chronic disease of the fatty tissue that affects women. The disease causes the body's fat cells to increase abnormally, especially on the hips and legs. Johanna said that historically there has been very little research on the subject and that the disease needs more attention. The lack of knowledge about the disease has meant that many affected women have not received the care they need. Women feel that they have been misdiagnosed as being overweight and that they have been advised to just lose weight and exercise more.

“Why doesn’t anyone believe me”

Mia Westberg Borst, one of the sufferers, spoke openly during the lecture about her experiences with the disease and the contact she has had with the health care system over the years. As a teenager, she was told that weight gain is something that happens to the body. When she later became pregnant, she gained even more weight, almost 30 kg, and had terrible pain in her legs. The weight was supposed to go away when she was breastfeeding, she was told by the health services, but this did not happen.

“Why doesn’t anyone believe me, what’s wrong with me – these were the thoughts I had before I was diagnosed,” says Mia.

Now she is involved in running the patient association Lymf in Jönköping, where she gets the opportunity to talk to like-minded people, which she thinks has been very helpful.

Engaged audience

The moderator during the lecture was Linda Johansson, research environment manager at the School of Health and Welfare, who was active when the audience had the opportunity to ask questions after Johanna and Mia’s lectures. It was an engaged audience who, among other things, got answers to what care is available, Johanna shared such care as compression clothing and pool training that relieves pain, and also that you cannot change your lifestyle to avoid lipedema.