By Michelle Luce, MSN, RN, CCM
Lipedema, a chronic tissue disorder, affects about 10%–11% of women, or approximately 400 million worldwide. Yet, it remains a largely misunderstood condition. Often mistaken for obesity or lymphedema, Lipedema causes disproportionate fat buildup in the lower body and sometimes the arms while sparing the hands and feet. This chronic condition impacts individual health and poses significant challenges to our healthcare system and society.
The Long Road to Recognition
For many women, obtaining a proper Lipedema diagnosis can be a frustrating journey that spans decades. Women often navigate from one doctor to another, facing misdiagnoses or dismissals of their concerns. Despite experiencing pain, tenderness, and swelling, many are simply told to lose weight—ineffective advice, as Lipedema fat does not respond well to traditional weight-loss efforts. As healthcare professionals, we must understand this struggle and its implications for women's health. Early recognition of lipedema can significantly improve health outcomes and quality of life.
Spotting Lipedema: What to Look For
When assessing for Lipedema, keep an eye out for these signs:
- Symmetrical fat distribution: Disproportionate fat in the hips, thighs, and legs
- Pain and sensitivity in affected areas
- Easy bruising
- Stubborn weight that won't budge with diet and exercise
- Family history of similar body shapes
- Nodules you can feel under your skin (pea to walnut size)
Assessing Your Risk: The Lipedema Risk Quiz
To further support individuals in identifying potential Lipedema, we offer a confidential Risk Quiz on our website https://www.lipedemahealth.com/quiz. This quiz helps assess your risk factors and can be a valuable tool in guiding conversations with healthcare providers. By understanding your risk, you can take proactive steps towards your health.
Introducing the i.LEAD Health Assessment Tool: A Holistic Approach
In addition to the Risk Quiz, we are excited to introduce the Integrated Lipedema Early Assessment and Discovery (i.LEAD) Tool, developed by Lipedema Health. This proprietary tool is designed to empower women who suspect they might have Lipedema by providing a comprehensive health support aid.
Once the i.LEAD tool receives IRB review we will proceed with the study, allowing participants to receive an individualized health report that can help guide conversations with their healthcare providers. While this report isn't a diagnosis, it serves as a valuable starting point for discussing symptoms and concerns.
Building a Care Team for Lipedema
If Lipedema is suspected, it is essential to take a collaborative approach to care. This typically involves assembling a team of specialists who can provide comprehensive support, including:
- Certified Lymphedema Therapists (CLT)
- Vascular and Pain Specialists
- Primary Care
- Mental Health Professionals
- Care Managers
- Nutritionists
- Physical Therapists
Managing Lipedema: Key Strategies
Effective lipedema management often involves:
- Properly fitted compression garments: Helps reduce swelling and improve circulation.
- Manual Lymphatic Drainage (MLD): A specialized massage technique that promotes lymphatic flow and helps reduce swelling and discomfort
- Tailored exercise programs: Focused on low-impact activities to support mobility and overall health.
- Nutrition guidance: Aimed at reducing inflammation and maintaining a healthy weight.
- Emotional support and self-advocacy skills: Empowering women to advocate for their care and mental well-being.
- Lipedema reduction surgery (Liposuction): Specialized liposuction techniques can remove diseased fat and provide significant relief, improving function and quality of life.
Addressing Lipedema Through a Public Health Lens
To tackle Lipedema, healthcare must:
- Educate providers for better diagnosis
- Increase public awareness
- Implement routine screenings
- Secure more research funding
- Advocate for insurance coverage of treatments
Improving Equity in Care
To ensure all women receive the care they deserve, we must reduce delays in diagnosis, expand access to specialized care, and address potential underdiagnosis. By prioritizing equity, we can help more women receive timely, appropriate treatment for Lipedema.
References
Czerwińska M, Ostrowska P, Hansdorfer-Korzon R. Lipoedema as a Social Problem. A Scoping Review. Int J Environ Res Public Health. 2021 Sep 28;18(19):10223. doi: 10.3390/ijerph181910223. PMID: 34639524; PMCID: PMC8508106.
Dudek, J.E., Białaszek, W. & Gabriel, M. Quality of life, its factors, and sociodemographic characteristics of Polish women with lipedema. BMC Women's Health 21, 27 (2021). https://doi.org/10.1186/s12905-021-01174-y
Kruppa, P., Georgiou, I., Biermann, N., Prantl, L., Klein-Weigel, P., & Ghods, M. (2020). Lipedema-Pathogenesis, Diagnosis, and Treatment Options. Deutsches Arzteblatt International, 117(22–23), 396–403. https://doi.org/10.3238/arztebl. 2020.0396
The CMSA Fellow designation recognizes leaders who shape the future of case management, elevate professional standards, and influence growth within the field. Are you ready to take the next step in your career and join this esteemed community? Apply now for the Class of 2025 and become a leader in case management: https://cmsa.org/about/fellow/
Bio: Michelle is a healthcare leader with expertise in case management, women’s health advocacy, and population health. A Certified Case Manager and former Mid-Atlantic CMSA President, she currently serves on the National CMSA Membership Committee. With a Master’s in Nursing Innovation focused on Intra/Entrepreneurship, Michelle champions evidence-based practices, especially for Lipedema care. As founder of Lipedema Health, she addresses care gaps for women with Lipedema, a frequently misdiagnosed condition. She developed the iLEAD tool for early Lipedema identification, now under IRB evaluation. Lipedema Health offers essential resources for women with the condition and their healthcare providers. Recently, Michelle received the Pennsylvania Nightingale Award for Entrepreneurship.