It’s hard to believe this summer marks 14 years since I was diagnosed with lipedema. Like many patients, I was initially only diagnosed with lymphedema in 2001, however, after I underwent bariatric surgery the telltale signs of lipedema were more evident. Lipedema wasn’t a new term for me. I had met another patient in a Yahoo group for lymphedema who, like me, had also had bariatric surgery, and she mentioned she also had this condition called lipedema.
The diagnosis confirmed what I knew my entire life – there was something just not right with my body. It was both a relief and a realization that I would never be “normal.” Treatment was the same as I was already doing for lymphedema, so there didn’t seem like there was much more I could do. I had always had large legs, and now I knew I’d always have large legs, so life went on. But, despite the initial improvement and weight loss after surgery, my lipedema eventually continued to progress, and I feared what my future held.
The more I learned about lipedema, the more I noticed the symptoms in pictures from my childhood. One of the most frustrating aspects of lipedema is that only someone who knows what they are looking at will diagnosis it. It’s that simple. My entire life doctors saw my weight and blamed my weight for all my health issues, but they never cared to find or understand the underlying cause. I was often deemed non-compliant and accused of lying about my diet and exercise when I didn’t lose weight as expected. Had I received a diagnosis earlier, I could have possibly stopped or slowed the progression of the disease. My story is not unique. Many patients had the same experience.
For nearly a decade, I knew only that one other lipedema patient. Yahoo groups and other forums had existed for years, yet the evolution of Facebook has provided a better way for patients to connect and communicate. I joined a group called Lipedema Sisters USA and a few members were planning to meet in Tucson in October 2013. I had never been in a room with so many women who looked like me. What was meant to be a small group gathering turned into a conference with nearly 100 attendees and spurred the resurrection of the Fat Disorders Research Society (FDRS).
The following years FDRS has hosted conferences in Washington DC, St. Louis, Salt Lake City and Dallas. In Salt Lake City and Dallas, patient research was conducted onsite. The ability to meet other patients and healthcare professionals, who not only know about lipedema but who are working to learn more about the disease, is a feeling I’ve never experienced in healthcare. I joke that, “I’m so popular, and doctors LOVE my fat!” I wonder if researchers of other conditions have a group of subjects as eager and willing to participate as fat disorder patients.
Despite being discovered by scientist at the Mayo Clinic in 1940, there is little known about lipedema. The lack of information hinders the ability to find effective treatments. There is hope on the horizon with current research aimed at understanding the cause and developing diagnostic tests for diagnosis. A diagnostic test will go a long way in giving lipedema the legitimacy needed within the healthcare community. The Lipedema Foundation, which was founded specifically for research, is currently seeking input for a Lipedema Patient Registry.
Sarah M. Bramblette, MSHL, is the Vice-chair of the Lymphedema Advocacy Group, and Chair of the Legislative Committee. She also serves on the National Board of Directors of the Obesity Action Coalition and co-chairs the OAC Access to Care Committee. Sarah is a past board member of National Lymphedema Network and she was a member of the 2018 Fat Disorders Research Society Conference Committee. Living with both Lipedema and Lymphedema she writes about her life experiences at born2lbfat.com to spread awareness about her conditions while advocating for improved diagnosis, treatment and insurance coverage for obesity and fat disorders. She has appeared on the syndicated show The Doctors and she gave the talk,“Breaking Bias,” about weight bias in healthcare at TEDxNSU.