The American Lipedema Association (ALA) took center stage at the September Lipedema Patient Roundtable. Founder Susan O’Hara, Board Vice President Carina Johannessen, and Board Member/Education Lead Constance Boyer, M.S., shared a preview of the topics they will present at the upcoming World Lipedema Congress in Rome this November. Their focus: the role of patient organizations, the importance of advocacy, and the mental health impacts of living with lipedema.
Although the ALA is less than two years old, it has already made significant strides—most notably in advocating for adoption of ICD-10 codes, which are critical for tracking lipedema prevalence, advancing research, and securing insurance coverage.
The discussion also touched on broader health issues, from toxins, microplastics, and gut health to mental health and depression. Strategies like deep breathing, probiotics, protein intake, and nervous system regulation were explored.
First-time attendees brought valuable questions about the differences between lipedema and lymphedema, as well as the role of manual lymph drainage (MLD). The group also highlighted the benefits of Lympha Press pneumatic compression therapy, which enables at-home treatment.
The evening closed with reflections on change and growth. Cara Cruz shared how adopting a sugar-free, high-protein lifestyle transformed her health—a path she couldn’t have imagined five years ago. Inspired by this, participants answered two “time machine” questions: What has changed most in your life over the past five years? and What do you hope to see in the next five? Their responses were uplifting, with Angelique Charles offering a heartfelt reminder to cherish the present and be vocal about our love for the people in our lives.
Special thanks to our anchor panelists and the leadership of ALA for bringing their wisdom and heart to the discussion:
- Jenny Beaujean (@Jenny_Beajean)
- Siouxie Boshoff (@lipedema.living)
- Constance Boyer (@constanceboyer)
- Angelique Charles (@TheLippyButterfly)
- Cara Cruz (@PaleGingerPear)
- Carina Johannessen (@carina_ur_lipedema_sister)
- Linda Anne Kahn (@lindaannekahn)
- Susan O’Hara (@legs_likemine)
- Brenda Viola (@BrendaViola_ViciCommunications)
This Roundtable was originally recorded live on September 17, 2025, and has been edited for time. The views and opinions expressed in this Patient Roundtable are those of the individual participants and do not necessarily reflect the official position of Lympha Press.
This video is intended for informational and educational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always consult your healthcare provider with any questions about your condition or treatment.