Patient Stories

Triple Diagnosis, One Mission: Carina’s Lipedema Advocacy Journey

For most of her life, Carina (@carina_ur_lipedema_sister) was told her body was a problem to be solved.

Despite being a dedicated athlete—playing seven sports and excelling in gymnastics—she was met with disbelief, diet plans, and blame. By the time she was 13, she had already been enrolled in a hospital-based weight-loss program and subjected to weekly weigh-ins. “No one asked why I was gaining weight. They just told me I was lying, lazy, or doing something wrong,” she recalls.

But Carina wasn’t lazy—and she certainly wasn’t giving up. Over the years, she pursued every avenue she could: from extreme dieting to gastric sleeve surgery, she was still being told she simply didn’t “understand how to be healthy.” The emotional toll was heavy. “I spent decades ashamed of my body, constantly fighting to be seen and heard,” she said. “I battled depression, anxiety, and an overwhelming sense of betrayal by the very system meant to help me.”

The turning point came when she saw a TikTok video of a joyful woman dancing (@allison.jacobsss), who looked just like her. “She was educating about Lipedema, and suddenly everything made sense.” That discovery led Carina to be diagnosed with Stage 3 Lipedema, finally explaining her lifelong symptoms.

In addition to her Lipedema diagnosis, Carina was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) and ADHD—conditions that are increasingly reported as common comorbidities. “I always thought I was just naturally flexible,” she said. “But my hypermobility, joint issues, and injuries suddenly made sense.” The combination of these conditions affects her connective tissue, proprioception, and overall physical resilience, making pain management and movement more complex. ADHD also shaped her health journey, contributing to delayed diagnosis and adding challenges in managing long-term care. Now, understanding how these conditions intersect has empowered Carina to approach her health holistically—and to advocate for others navigating similar paths.

Armed with this knowledge, Carina’s mindset shifted. “It wasn’t my fault. And more importantly, it was never about willpower—it was about a medical condition that had been misunderstood for too long.” Rather than stay in the shadows, she chose to speak out.

Today, Carina speaks out about the importance of early diagnosis, compassionate care, and widespread education. As a nurse herself, she uses her voice—and her personal experience—to educate peers and providers alike. She even carries the Lipedema Foundation’s Clinician’s Guide in her purse, ready to hand out at any moment. “I met a chiropractor at the dog park who had never heard of Lipedema,” she said. “I gave him the guide, and he was amazed. That’s the kind of awareness that can change lives.” Additionally, Carina participated in the first LF Biobank event, contributing samples that have the potential to shape future Lipedema-related research.

Carina is also passionate about addressing the mental health impact of Lipedema, particularly the lasting harm caused by years of being dismissed or misdiagnosed. “At my first FDRS conference, I asked a group of women how many had experienced significant trauma. Every single hand went up,” she said. “We need to treat the emotional pain just as seriously as the physical.”

Now, Carina is stepping fully into her role as an educator, advocate, and source of strength for others. She is the Vice President of the Board for the American Lipedema Association and plans to represent the organization and submit to present at the 2025 Lipedema World Congress in Rome to spread more awareness globally. “I’m not hiding anymore. I wear what I want! Before, I would wear long sleeves and pants all the time, even in 90+ degree heat. Now, I speak up. I want teens and young adults to know: you are not broken! You deserve answers and appropriate treatment.”

The Lipedema Foundation stands alongside advocates like Carina.
If you or someone you love is living with unexplained weight gain, pain, or swelling, visit www.lipedema.org for resources, research, and support. Download our Clinician’s Guide, join the Lipedema Registry, and help us lift the stigma—because every voice matters, and every story can spark change.