Lipedema Reduction Surgery Improves Pain, Mobility, Physical Function, and Quality of Life

 

Lipedema Reduction Surgery Improves Pain, Mobility, Physical Function, and Quality of Life: Case Series Report

Wright, Thomas MD*; Babula, Megan AS*; Schwartz, Jaime MD; Wright, Corbin BS, MS; Danesh, Noah BA; Herbst, Karen MD, PhD

A new USA research paper documents knee joint improvement and gait improvement through Lipedema Reduction Surgery (LRS).  Using the same outcome measurements used in Orthopaedic literature and shows comparable or better improvements in mobility, quality of life measurements and knee flexion than a Total Knee Replacement.  

This is the first Paper to document LRS/Lipedema Surgery Outcomes paper from the US.

and to:

  • document knee joint improvement and gait improvement from LRS.
  • to correlate patient-reported outcomes with objective physical measurement improvements.
  • to use the same outcome measurements used in Orthopedic literature and show comparable or better improvements in mobility, quality of life measurements, and knee flexion than a Total Knee Replacement. 
  • to show improvement in mobility measurements that correlate with future disability and life expectancy

The Lipedema Research Roadmap

 

The Lipedema Research Roadmap

The Roadmap incorporates input and over 1,300 suggestions and comments from more than 60 global stakeholders, who participated in brainstorming sessions and as reviewers. Participants included researchers, patients, surgeons, physicians, therapists, and funders.

The Lipedema Research Roadmap recommends action to grow and strengthen research through six objectives:

  • Create an Environment Conducive to High-Quality Research
  • Develop a Standard Lexicon and Best Practices
  • Develop Diagnostic and Biomarker Tools
  • Characterize Biology of the Disease
  • Develop Treatments
  • Cultivate Greater Epidemiology Understanding

Learning by Listening

 

Early findings from the Lipedema Foundation Registry survey

Charting a new era in Lipedema research

The comments and interpretations presented in this document were informed and reviewed by a panel of patient partners including Sharie Fetzer, Linda-Anne Kahn, Isobel MacEwan, Rebecca Morris, Marlene Simpson, Jessica Webb, and Nola Young. The Foundation is deeply indebted to their thoughtful and thorough review of the draft analysis and gratefully acknowledges their contributions.

This report focuses on the experiences of 521 people who either report having received a Lipedema diagnosis, or have symptoms sufficient for them to believe they have Lipedema. Data from non-Lipedema populations has been collected, but is not presented in this report.

Though this report is a great start, we hope it can be a tool to advance Lipedema awareness, understanding and care. Key next steps include:

  • Challenging healthcare professionals to recognize and understand Lipedema, and stop stigmatizing and dismissing patients when they seek care.
  • Informing scientific hypotheses and the research agenda.
  • Expanding and diversifying Registry participation, to ensure it represents the true diversity of the Lipedema patient population. Analysis of patient experience reminds us that Lipedema can present in many ways. This diversity asks us to take a closer look at typical descriptions of Lipedema, and this report should influence how we think about anatomical changes in Lipedema and progression of the disorder.

These insights must be followed up with formal medical studies, but many hypotheses to be tested have been captured here in the patients’ own voices.

Research Publications and Projects

 

Lipoedema cells are different to obesity

Groundbreaking Australian Research- 2021

Key signaling networks are dysregulated in patients with the adipose tissue disorder, lipedema

Authors: Musarat Ishaq, Nadeeka Bandara, Steven Morgan, Cameron Nowell, Ahmad M. Mehdi, Ruqian Lyu, Davis McCarthy, Dovile Anderson, Darren J. Creek, Marc G. Achen, Ramin Shayan and Tara Karnezis. 

Led by Dr Tara Karnezis and Associate Professor Ramin Shayan, the Australian team found that people with Lipoedema have stem cells that differ from those in normal fat, in almost every way.

Their research identified a gene involved in cellular growth within the abnormal lipoedema stem cells, which can drive more stem cells to form more fat cells. By introducing drugs that inhibit this gene pathway, the team was then able to block fat stem cell growth to a baseline or ‘normal’ level, showing the potential for treatment.

“For years, I have lived with lipoedema, and been told that diet and exercise was the path to better health. Now, science is starting to explain why I could never curb my body’s excess fat production through lifestyle controls. I am not obese and have a real medical condition that needs treatment. This research is exactly the kind of breakthrough that people like me have been waiting for. It provides renewed hope for me, that my children may not have to suffer the way I have suffered all my life.” Nola Young, Chair Lipoedema Australia. 

Ongoing German study compares results of Liposuction with conventional treatments

 A randomised controlled multicentre investigator-blinded clinical trial comparing efficacy and safety of surgery versus complex physical decongestive therapy for lipedema (LIPLEG) 2021

Authors: Maurizio Podda, Maximilian Kovacs, Martin Hellmich, Rebecca Roth, Marouan Zarrouk, Daria Kraus, Reinhild Prinz-Langenohl and Oliver A. Cornely.

LIPLEG assesses whether surgical treatment of lipedema is safe and effective to reduce pain and other lipedema-related health issues. The findings of this important German trial have the potential to change the standard of care in lipedema.

The LIPLEG trial evaluates the efficacy and safety of liposuction compared to standard CDT (complex physical decongestive therapy).

The trial is conducted in accordance with the Inter- national Conference on Harmonisation for Good Clinical Practice (ICH-GCP). The trial will always comply with the Declaration of Helsinki. The results of this trial will be submitted for publication in peer-reviewed scientific journals and presented at national and international conferences. 

Recruitment of participants started in December 2020 and last patient’s last visit is expected in summer 2025.

Management of Lipedema with Ketogenic Diet: 22-Month Follow-Up 2021

 Authors: Roberto Cannataro, Sandro Michelini, Lorenzo Ricolfi, Maria Cristina Caroleo, Luca Gallelli, Giovambattista De Sarro, Alberto Onorato and Erika Cione.

Ongoing St George’s University Hospitals NHS Foundation Trust Genetic Research

The Lymphoedema department at St George’s Hospital led by Professor Peter Mortimer, Dr Kristiana Gordon and Dr Pia Ostergaard, together with the Lymphoedema Department of University Hospitals of Derby and Burton NHS Foundation Trust led by Professor Vaughan Keeley are renowned for their genetic research in both Lymphoedema and Lipoedema.

Approximately 300 individuals have been recruited to the study to identify defects in the genetic codes that define Lipoedema. 247 are Lipoedema patients and the remainder unaffected relatives. 

Lipoedema is also included in Genomics England’s 100,000 Genomes Project https://www.genomicsengland.co.uk/).

Latest Update on the Project 2021

In 2021, St George’s published the below report, click on the image below to download the full document. 

The Lipoedema Foundation has now awarded further funding for the next stage of the research. See the link below for more details. 

Deciphering the Genetic Basis of Lipedema- Funded by The Lipoedema Foundation

The Chronic Illness Inclusion Project Lipoedema Reports

Lipoedema UK submitted a response to the Government’s consultation on its Women’s Health Strategy.
 
Our response was compiled from data collected by the Chronic Illness Inclusion Project which  hosted a section on its survey for the responses of people with Lipoedema, which was shared this widely among our members and on social media. 
 
Their responses were unsurprising, with many women feeling disbelieved, sometimes for decades, not obtaining diagnoses easily, and most often being refused appropriate treatment for lipoedema.