I started Lipedema Navigator to share what I’ve learned throughout my lipedema journey.

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After a series of medical challenges and misdiagnoses, I was finally diagnosed with lipedema in 2023. Since then, I’ve researched lipedema and sought out the best medical interventions and therapies to feel better, inside and out. After seeing countless doctors, it was shocking how many of them were unaware of lipedema and how many women it affects. I visited some of the top medical institutions in the United States and refused to give up. This persistence and curiosity ultimately led me to my diagnosis.

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This was a diagnosis I was unfamiliar with, but it also brought me great relief and validation. Although it was a challenging time in my life, it led me to a new passion: helping other women get the care they need and bypass the years of uncertainty that I experienced. I learned how to navigate the medical system, trust my gut, and reclaim my health.

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After watching my medical journey, one of my doctors began noticing symptoms associated with lipedema in some of his patients. He suggested they contact me to learn more about my experience. At times, he was connecting me with several women a week, all with similar stories and frustrations. Many had seen multiple doctors across different specialties, receiving different diagnoses each time, but never one of lipedema.

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While learning how to navigate the healthcare system, I also became familiar with the role of a patient advocate. I realized how much I enjoyed helping the women who were reaching out to me and began planning my future as a resource for women with lipedema. I earned my board certification in patient advocacy and established Lipedema Navigator as a nonprofit organization dedicated to helping women with lipedema get the care they deserve.

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Lipedema affects everyone differently, but one common thread is that most patients are initially misdiagnosed. It’s an exhausting and isolating process, but it doesn’t have to be. I have developed tools, resources, and partnerships to support women with lipedema and the medical professionals who treat them.

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All of the skills I’ve learned over the last 20 years in development apply to advocacy work. It’s about building relationships and listening to people. Women with lipedema deserve compassionate, coordinated care and, most of all, they deserve to be heard.