By Sarah Bramblette, MSHL, OAC Senior Advocacy Manager

I was born with lipedema, but I didn’t know it growing up. I spent my childhood wondering why my body looked different from my siblings’ and my friends’ even though we ate the same foods, played the same outdoor games and walked to school together.

I was initially diagnosed with lymphedema in 2001, and finally diagnosed with lipedema in 2004. That diagnosis answered many questions I’d had my entire life, but for the last 25 years I’ve waited for lipedema to receive the recognition it deserves.

That’s why I was excited to learn that lipedema has been approved for its own ICD-10 diagnosis code. While these codes won’t take effect until October 2027, this milestone represents far more than a new billing code. It validates a disease that has been misunderstood, overlooked and too often dismissed.

As someone living with both obesity and lipedema, I know firsthand why this recognition matters. Lipedema is often mistaken for “typical” obesity, but the abnormal fat tissue associated with lipedema does not respond to calorie reduction or exercise in the same way as typical body fat. Without an accurate diagnosis, patients can spend years pursuing treatments without understanding why they aren’t achieving the expected results.

One of my goals, when I first became an Obesity Action Coalition (OAC) Advocate, was to raise awareness that lipedema exists and that not all excess weight has the same underlying cause.

The mission was personal for me because my own diagnosis was delayed for years and didn’t occur until after undergoing bariatric surgery. As I lost weight, the disproportion between my upper and lower body became much more apparent. When I finally saw a physician knowledgeable about lipedema, one of the first questions they asked was whether my bariatric surgeon had told me that surgery would likely help me lose weight primarily above the waist. Of course, that conversation never happened because my surgeon likely didn’t recognize that I had lipedema.

That moment changed the way I thought about diagnosis. If my healthcare team had recognized my lipedema before surgery, my expectations—and theirs—could have been much more realistic.

Instead, when I didn’t lose weight as quickly as expected, I faced the same assumptions so many people living with obesity experience. Despite following my treatment plan, I was questioned about whether I was complying with the program. Those experiences reinforced the importance of recognizing that obesity and lipedema can exist together and patients deserve care based on an accurate diagnosis, not assumptions.

That’s why these new diagnosis codes matter.

They will improve medical documentation, support research, strengthen data collection and help providers better identify patients living with lipedema. They also have the potential to improve insurance coverage and help patients and healthcare providers set realistic expectations for treatment.

I’m grateful that OAC has long recognized the importance of educating the obesity community about lipedema. From sharing my story in the Weight Matters Magazine to submitting letters of support for the creation of these diagnosis codes.

For me, this announcement feels like validation after 25 years. Lipedema isn’t a rare disease—it’s simply underdiagnosed and too often misdiagnosed because of the weight bias that still exists throughout healthcare and society.

Every patient deserves an accurate diagnosis. Only then can they receive appropriate treatment, realistic expectations and compassionate care.

It’s the diagnosis I’ve waited 25 years for. And it was worth the wait.

Watch ObesityWeek Patient Perspectives on Lipedema to hear more about Sarah’s inspiring story and learn why greater awareness, accurate diagnosis and compassionate care are so important for people living with lipedema.