Sweden’s first doctoral thesis on lipedema was conducted by Johanna Falck, against the background of the insufficient knowledge about the disease among healthcare professionals.

Between 2020 and 2025, a doctoral project on lipedema was conducted at the School of Health and Welfare, Jönköping University. The thesis, being the first in Sweden on lipedema, explored women’s health, quality of life, social life, and their experiences with healthcare and treatment. Data were collected through a national online survey and in-depth interviews with women with lipedema.

Health and symptoms

The results showed that women with lipedema experienced many health problems, such as chronic pain, swelling, heaviness, numbness, feeling cold, easy bruising, and sleep problems. Almost all participants also had comorbidities.

Healthcare and treatment

Many women waited decades for a diagnosis. A lack of knowledge among healthcare professionals, repeated misdiagnoses, and limited access to treatments often characterize their healthcare journey. Many tried to manage their symptoms on their own, but the treatments provided by healthcare professionals were perceived as the most effective.

Quality of life and social life

Women with lipedema reported significantly lower health-related quality of life and more experiences of stigma compared with other women of the same age. Feelings of guilt and shame affected social life and relationships early in adulthood and often increased as the disease progressed. Intimate relationships and sexual life were also negatively affected, although these issues were rarely discussed with partners or healthcare professionals.

Conclusion

Lipedema has a significant negative impact on health, quality of life, and social life. Despite this, many women do not receive the support and care they need. Early detection and support for women with lipedema require increased knowledge among healthcare professionals, a multidisciplinary approach, and equal access to healthcare and treatment.

Doctoral thesis

Falck, J. (2025). Women with lipedema: an exploration of health, quality of life, social life, and healthcare experiences (Doctoral thesis, Jönköping: Jönköping University, School of Health and Welfare). More information

The four sub studies

Falck, J., Rolander, B., Nygårdh, A., Jonasson, L., Mårtensson, J. (2022). Women with lipoedema: a national survey on their health, health-related quality of life, and sense of coherence BMC Women's Health, 22(1). More information

Falck, J., Nygårdh, A., Rolander, B., Jonasson, L., Mårtensson, J. (2025). Dealing with lipoedema: women's experiences of healthcare, self-care, and treatments-a mixed-methods study BMC Women's Health, 25(1). More information

Falck, J., Herbst, K., Rolander, B., Nygårdh, A., Jonasson, L., Mårtensson, J. (2025). Health-related stigma, perceived social support, and their role in quality of life among women with lipedema Health Care for Women International. More information

Falck, J., Mårtensson, J., Jonasson, L., Dudek, J., Nygårdh, A. (2025). Experiences of Sexual Health and Intimate Relationships in Women With Lipedema: A Qualitative Study Journal of Advanced Nursing. More information