Patient Stories

The Cost of Being Overlooked: Crystal’s Late-Stage Lipedema Journey

For years, Crystal (@cfitrevolution) knew something wasn’t right.

Despite a strict diet and a dedicated workout routine, her body wasn’t responding. Doctors dismissed her concerns, suggesting she simply eat less or undergo gastric bypass surgery. “I was eating under 1,000 calories a day and still gaining weight,” Crystal recalls. “I went to multiple endocrinologists, specialists, and even considered weight loss surgery—no one had answers.”

It wasn’t until 2018, after nearly three years of relentless searching, that a gastric bypass surgeon finally pointed her in the direction of someone who could help. “She told me, ‘Crystal, you don’t need gastric bypass surgery. I think I know someone who might be able to help you.’” That referral led to her Lipedema diagnosis—something she had never even heard of until that point.

Crystal’s experience is far from uncommon. She’s part of a larger, often overlooked group of women living with Lipedema. “Most Black women haven’t even heard the word ‘Lipedema,’” she says. “Doctors often mishear it as ‘lymphedema,’ and even some medical professionals aren’t familiar with the condition.” She adds that in communities of color, the stigma around weight can further complicate an already difficult journey. “We’re often ridiculed for our size without anyone asking why. That kind of misunderstanding hurts deeply and mentally wears you down.”

That’s why Crystal has made it her mission to raise awareness, especially among women of color and those living with later-stage Lipedema. “So many of us feel invisible. By the time you reach stage 3 or stage 4 (also known as Lipolymphedema), you’re in pain, you’re exhausted, and for many, there’s a sense of lost beauty or worth,” she says. “But I want them to know: You are not alone, and we are worthy of the same care, respect, and answers as everyone else.”

A turning point came thanks to her friend and co-host of ‘Living with Stage 3 Lipedema’ Instagram Lives, Pattie Cornute, a fellow patient and passionate advocate. “Pattie and I met on social media and became very close over the years. We called each other our Warrior Twin. About a month before she passed, she told me about a new Lipedema clinical trial at Stanford,” Crystal explains. “She knew I was struggling with worsening pain, hair loss, and weight. She encouraged me to research the study, and I did.” That encouragement led Crystal to a Lipedema clinical trial, where only 13 women globally have been accepted.

Crystal began the trial in April 2025, traveling from Maryland to Stanford for the opportunity. Just a few weeks in, she noticed small but meaningful changes: less pain, quicker recovery times, and even some weight loss. “It’s early, and we know it’s a trial—but it’s hope. And that hope means everything,” she says.

Crystal continues to be a voice in the Lipedema community, especially for those who may not feel seen. While she’s taken a short break from social media to focus on her career and healing, she’s committed to returning and sharing her journey. “Even when I’m in pain, I move. If I can’t run, I lift my arms. Movement matters, and so does showing others that you can live with Lipedema and still thrive.”

She believes every woman deserves to feel seen, understood, and supported—no matter their background, body, or the stage of their disease. “If you think something’s wrong, keep going. Keep asking questions. There are answers out there.”

The Lipedema Foundation is here to help.
If you or someone you love is struggling with Lipedema, visit www.lipedema.org to explore trusted resources, connect with the community, and learn more about current research. While there are not many clinical trials, you can check out Legwork to see if there are any accepting patients near you. Every voice matters—and every journey deserves recognition.