Elevating Lipedema Care Through Advocacy, Resources, and Collaboration

Lipedema remains a complex and often underdiagnosed condition that significantly impacts the lives of many women. At Lipedema Health, we advocate for improved provider knowledge, patient-centered care, and better communication between women and their healthcare teams.

Whether you are a healthcare provider seeking to enhance your understanding of lipedema or a patient navigating the healthcare system, our resources empower you with the knowledge to drive meaningful outcomes.

What We Offer:

Practical Tools & Resources

Downloadable guides like the Discover Toolkit, featuring evidence-based tools such as the ILEAD risk assessment and communication guides.

Resources designed to improve patient-provider collaboration and support better care delivery.

Advocacy for Better Care

Patient empowerment tools that help women take charge of their health.

Support for providers looking to expand their awareness and approach to Lipedema care.

Building Expertise Together

While formal training programs evolve, Lipedema Health remains a resource hub for foundational tools and knowledge that bridge the gap between patients and providers.Resources that build bridges between women and their healthcare teams for more effective communication and outcomes.

Advancing Lipedema Awareness: Our Past Contributions

At Lipedema Health, we have been privileged to contribute to the growing awareness of Lipedema through presentations at national and local conferences. These efforts have focused on:

Improving Clinical Understanding: Sharing evidence-based insights to enhance care.

Patient Advocacy: Encouraging better communication and understanding between women and their healthcare providers.

Empowering Healthcare Professionals: Providing actionable tools to support lipedema care.

These foundational contributions reflect our commitment to advancing care through advocacy and resources.

Program Highlights

These past programs were created with the goal of advancing clinical understanding, improving patient care, and advocating for Lipedema patients.

Lipedema Advocacy: A Case Manager’s Role to Enhance Patient-Centered Care

  • Date: June 5, 2024

  • Delivered At: National CMSA Conference

  • CE Credits: 1 CCM, RN, LSW, Disability

  • Abstract:
    This program highlighted the far-reaching consequences of Lipedema, a frequently misdiagnosed chronic tissue disorder, and its toll on patients and healthcare systems. Emphasizing the critical role of case managers, the session explored advocacy strategies to address healthcare inequities, promote early diagnosis, and prevent advanced disease progression.

    • Participants Learned To:

      • Recognize the significance of early diagnosis in preventing advanced Lipedema.

      • Identify evidence-based best practices (standards of care) and multidisciplinary approaches to care.

      • Address healthcare biases and inequities to enhance patient-centered outcomes.

    This session empowered case managers to take proactive steps in advancing equitable Lipedema care, supporting both patient well-being and systemic improvements.

Lipedema Awareness: Preventing Disability in an Underdiagnosed Population

  • Date: October 9, 2023

  • Delivered At: CMSA Mid-Atlantic Chapter (Local Event)

  • CE Credits: 1 CCM, RN, LSW

  • Abstract:
    This presentation equipped nurses and case managers with practical tools to identify and manage Lipedema, emphasizing the importance of early diagnosis to prevent disability. It provided actionable strategies for reducing healthcare disparities and improving patient outcomes.

    • Participants Learned To:

      • Recognize the signs and symptoms of Lipedema for timely intervention.

      • Understand the role of nursing professionals in advocating for effective care.

      • Apply patient-centered strategies to improve quality of life for Lipedema patients.

These programs laid the groundwork for building awareness and fostering improved care for women living with Lipedema.

Public Speaking & Engagement

We also offer public speaking events tailored to healthcare professionals and community groups. These talks aim to increase awareness of Lipedema, share the latest research, and provide practical tips for improving care.

Promotional image for a 2024 CMSA Annual Conference featuring a case manager's role in lipedema advocacy, with Michelle Luce, from June 4-7, at the Rhode Island Convention Center.

Bridging the Knowledge Gap

Awareness and education about Lipedema are vital to improving outcomes for women. As a nurse, I’ve seen firsthand how the lack of understanding and late diagnosis impact women’s lives—leading to unnecessary pain, frustration, and delayed care. By addressing these challenges, we can empower both patients and healthcare providers to close the gaps in care, foster earlier recognition, and create a path to better management