Patient Stories

Dancing Through the Pain: Sharmela’s Mission to Make Lipedema Seen

For years, Sharmela (@sugoichan) thought her body was just “bottom-heavy.”

She chalked it up to genetics—her African American and Puerto Rican heritage, her pear-shaped figure, and a lifetime of fluctuating weight. But there was always something different about her legs, especially the persistent swelling and the tell-tale “cuff” at her ankles that had lingered since high school. It wasn’t until her 40s, after years of pain, fat-shaming from medical professionals, and systemic dismissal, that she finally heard the word: Lipedema.

The diagnosis didn’t come easily. Like many others living with Lipedema, Sharmela's symptoms were misunderstood and misdiagnosed for years. Her journey was filled with frustration—moving across state lines, changing healthcare systems, and sitting through appointments where her pain was dismissed and her body was blamed. Even with a husband who worked as a personal trainer, doctors looked past her advocacy and support system, asking her to keep a food journal or walk more, without recognizing the disease that was progressing in plain sight.

It wasn’t until she was referred to a vascular doctor at the University of Chicago that things began to shift. After undergoing a lymphoscintigraphy test to rule out lymphedema, Sharmela was finally diagnosed with Lipedema. The validation was life-changing. “She looked at my legs and said, ‘You look like you have Lipedema,’” Sharmela recalls. “And that was the first time I felt seen.”

Determined to turn her pain into purpose, Sharmela and her husband launched a year-long campaign called Move 365 to raise awareness about Lipedema. Every day for an entire year, they danced together, sharing videos on social media that showcased their joy, their partnership, and the reality of life with this condition. Even on days when she was in unbearable pain, Sharmela showed up. “Some days, he was practically holding me up,” she says. “But we did it. Because people need to see that this is real—and that we are fighting.”

Despite her efforts, access to care remains a major hurdle. When she consulted with a leading Lipedema specialist, she was quoted over $87,000 for surgery—an option far out of reach for most patients. Insurance coverage remains a barrier, and treatments like compression therapy, lymphatic drainage, and medications are expensive and often inaccessible without financial resources or advocacy support. “You have to prove that you deserve a better quality of life,” Sharmela says. “And that’s just not right.” (Read more about treatment options and identify free or low-cost options at Lipedema.org/treatments.)

Through it all, Sharmela continues to fight—not just for herself but for others. She’s passionate about educating healthcare providers, trainers, and the public. Her story reminds us of how important it is to expand research, access, and empathy in every direction.

Sharmela wants people to understand the emotional toll of living with Lipedema. “Before I even knew I had this disease, I was more confident,” she says. “This condition tears into your self-esteem. But I’m still here. I’m still moving. I’m still advocating.”

The Lipedema Foundation is here to help.
If you or someone you love is struggling with unexplained fat accumulation, swelling, or pain in the legs or arms, don’t wait. Visit www.lipedema.org to learn more about Lipedema, find resources, and connect with a community that understands. Early diagnosis matters—and every story shared brings us one step closer to a world where Lipedema is recognized, researched, and properly treated.