Bringing together the best and brightest minds working in Lipedema research.
The Lipedema Foundation led its pioneering 2022 Scientific Retreat in Reston, VA, this past December, as researchers and clinicians convened from around the globe for three days of learning, conversation, and collaboration.
More than 65 attendees engaged in presentations and panel discussions and received updates on LF-funded projects. They also contributed to small-group breakout sessions and networking events, including a poster session.
“As we create a roadmap for research, we organized our retreat to bring a world of viewpoints to the conversation. In addition to Lipedema’s impact on biology, the condition cannot be understood without considering what research tells us about its impact on the lives of patients,” said Dr. Guy Eakin, Chief Science Officer of the Lipedema Foundation. “Our multi-stakeholder approach helped ensure that research works for everyone, and kept us on the edge of our seats learning about what is taking place at the forefront of Lipedema research.”
The retreat started with a panel discussion composed of the different stakeholders whose lives and professions are impacted by Lipedema research. The session included a patient, an occupational therapist, a surgeon, a physician, and a representative from the National Institutes of Health (NIH). Here are a few highlights from their discussions:
Patient
Kasi Grosvenor shared her experience from the patient’s perspective. Diagnosed with Lipedema in 2021, Kasi stated she didn’t want to be defined by her diagnosis – she wants to thrive as a person who happens to have Lipedema. She brought to life the challenges that most patients can relate to, like not being able to find a pair of knee-high boots that can accommodate a larger calf or the painful squeeze of a blood pressure cuff designed for a smaller arm.
Kasi outlined the steps she is taking to improve her outcomes, including conservative treatments such as healthier eating, exercise, and using compression garments. In addition, she chose to have surgery to remove excess fat in her legs and cautioned that surgical intervention is a deeply personal choice not to be taken lightly. She also mentioned that managing mental and emotional health is as important as any physical measure a patient may take. She encouraged patients to become actively involved in the Lipedema community by joining social media groups and attending patient roundtables.
Occupational Therapist
Molly Sleigh, OTD, OTR/L, CLT-LANA, is an Occupational Therapist with Rocky Mountain University/Centura Health. Dr. Sleigh brought the perspective of a therapist who works with Lipedema patients in her practice and how she helps to translate what the patient has to say into the language of medicine. For example, she discussed how therapists can help Lipedema patients improve functional activities, such as difficulty getting dressed or walking through a store. But other conditions, like pelvic floor dysfunction, are not seen in the medical literature and need to be investigated to improve the quality of life for Lipedema patients.
Dr. Sleigh also pointed out that there is a lack of tools that have been validated for Lipedema patients, who are often misdiagnosed as obese. She said that current evidence supports decreased muscle strength, less endurance, and lower exercise capacity for Lipedema patients versus overweight and obese patients, and there is a need to better understand what treatments and interventions will be useful for those with Lipedema.
Surgeon
Nadiv Shapira, MD, is a Surgeon and Medical Director of First State Lipedema. As a doctor who routinely performs liposuction on Lipedema patients, he reminded us that not all fat is created equal. The deep fat that surgeons remove as part of their Lipedema procedures is very different from fat that is closer to the skin. This important reminder highlights the fact that in many studies of Lipedema, it is only the fat closest to the skin that is analyzed. So the surgical perspective that the tissue whose removal is most likely to benefit the patient may be missing from some studies. This is a noteworthy reminder for this growing field to – dare we say it – think more deeply about Lipedema.
Physician
Steven Dean, DO, FSVM, RPVI, is a Clinical Professor of Medicine at the Ohio State University Wexner Medical Center. Dr. Dean brought the perspective of a physician who diagnoses Lipedema and must contend with the diversity with which Lipedema appears in his office. He asked if our current staging is serving the research community the way we imagine it should and suggested other observations that he and others have made that might help us understand whether different types of Lipedema exist in our patient community.
In particular, he looked back to historic observations that used to classify Lipedema according to skin coolness (hypothermia) and discoloration. While not in vogue to discuss Lipedema types in these terms today, he rekindled our appreciation of diversity in the condition, discussing other features such as blistering and texture changes. Together, the complexities he sees in the clinic as a diagnosing physician suggest that our research community is likely to uncover biologically important differences in how individual people develop Lipedema or how they might progress differently from other women with Lipedema.
National Institutes of Health
Selen Catania, PhD, is a Program Officer with the NIH. As a representative of the world’s foremost funder of medical research, Dr. Catania pointed to the importance of advocacy for Lipedema research. While the NIH has only begun to support focused Lipedema awards, she discussed how the NIH responds to priorities expressed by the research community. The trend toward the inclusion of Lipedema in NIH symposia is evidence of the growing importance of Lipedema, and the value of continuing to raise awareness in professional communities. Lipedema has to be brought into the conversation where the conversation takes place.
In addition to the stakeholders’ perspectives, we also featured more than 25 sessions on basic biology, translational opportunities, monitoring and diagnosis, and more. We also received valuable feedback from the community in breakout sessions on how to tackle our ability to measure Lipedema, improve epidemiology, build research resources, and of course, improve the knowledge of Lipedema science that leads to future therapies tied to the disease.
The discussion of ideas and data serves as a crystal ball for what we will report in future blogs and newsletters. As the research and related studies become publicly available, we will be sure to let you know!
More than 65 participants from around the globe attended the 2022 Scientific Retreat.
Kasi Grosvenor sharing her experience from the patient’s perspective.
In addition to stakeholder perspectives, we held sessions on biology, translational opportunities, monitoring and diagnosis, and more.