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Living with Lipedema – A Patient Perspective

by Sarah Bramblette

Spring 2014

The last time my body mass index was in a normal range was when I was born. In second grade, I weighed 125 pounds, and I remember that because it was when the school nurse pulled me out of class to tell me I was fat. Honestly, until that moment, I did not know I was any different than my classmates. From that point on, I gained an average of 25 pounds a year, weighing more than 400 pounds when I graduated high school, and eventually reaching my highest known weight of 502 pounds.

I have a congenital condition called lipedema that causes my body to produce excess adipose tissue, also known as fat. Not all lipedema patients are affected by obesity. I suffer from a progressed stage with the additional complication of lymphedema. Throughout my life, doctors often blamed my weight for any medical issue I suffered, yet no doctor ever diagnosed the cause of my excess weight. My overall health was normal, and as a child, I never had metabolic co-morbidities. I believe that had I been diagnosed with lipedema earlier in my life, it may not have progressed to such an irreversible state. I became an advocate to share my story and spread awareness of lipedema so that other patients are properly diagnosed and receive the treatment needed to manage the condition.

At a young age, I sensed there was something wrong with me, as I never felt fat. For whatever that means, I remember telling my sister once that I’m not fat on the inside. I was a relatively active child, and in college, I questioned why my weight had never plateaued. Even if I had some bad habits, they were the same habits I had for years, so why did my body not level off at a certain weight like others? Then there was the abnormal size of my legs, grossly abnormal. I would compare my legs to others my size that had normal legs and wonder what was wrong with me, while my doctor told me it was “just my weight.”

My Diagnosis

The most difficult part of a lipedema diagnosis is actually getting a doctor to diagnosis it. I was initially diagnosed with lymphedema in 2001, a diagnosis took two years to receive, and I began compression therapy. In 2003, I had gastric bypass surgery. My weight-loss after surgery was slower than expected and occurred mostly above the waist. In 2004, I moved to Miami and saw an actual lymphedema specialist. During my initial visit, he diagnosed my lipedema, in addition to lymphedema. By a simple visual exam, he saw that my feet were not affected by the lymphedema. I had the “ankle ring” and a negative Stemmer’s sign. The frustrating part of the diagnosis process is that all it took was a doctor knowledgeable of the condition to look at me. Both diagnoses were done visually, with no complicated or invasive tests needed.

My lipedema diagnosis was a relief and a concern. A relief that my weight was “not my fault,” and it was a concern as “if the weight was not my fault, then what control did I have to change it?” By this time, however, I was already making changes. I had lost nearly 200 pounds from the compression therapy and bariatric surgery. I had my health back. Yes, although I had no major metabolic health issues related to my weight, my legs did cause many health complications. I suffered recurrent cellulitis (a skin infection caused by bacteria) that often required hospitalization for IV antibiotics. I have very poor IV access, so twice I had to have a central line inserted, and at one time, had a medi-port placed, all high risk procedures with possible complications.

My medi-port had to be removed due to a MRSA infection. The recurrent infections damaged the blood vessels in my legs, which lead to the formation of a deep vein thrombosis. As strong as I am, it is upsetting to think that much of these health complications could have been prevented had I received an earlier diagnosis of my lipedema, and had not developed the additional lymphedema.

Bias in Healthcare

The biggest health risk I face due to my weight is the bias I experience in accessing healthcare. Many doctors blame weight for all other health issues. My lymphedema was initially blamed on my weight. Whenever I failed to lose weight, doctors assumed I was not trying. After I had bariatric surgery and did not reach my goal as expected, I was deemed non-compliant. When I would show my food journals, I would often be called a liar. When doctors deem you non-compliant, it impacts the overall care they provide to you.

Maintaining my health is a constant battle against bias, otherwise my current health is good. I am concerned with the progression of my lipedema, as I have regained weight since reaching my lowest loss after surgery. The affected areas are the last place weight is lost, but the first place weight is regained. I also had two brachioplasty surgeries to remove excess skin, but my arms are now bigger than before surgery.

While the prospect of having a condition to which I have little control is daunting, I do at least have the knowledge of why I am not able to lose weight normally. Long ago I made the decision to move forward with life, gather up my fight and go full speed ahead. I might not know where I am going, or how my lipedema will progress, but nothing is going to deter me from being me or living my life to the fullest. I had never let my weight hold me back, and I am surely not going to let lipedema, despite the challenges, keep me from living the life I want to live.

One of the reasons I became a member of the Obesity Action Coalition was the mission to end weight bias and encourage advocacy efforts. I am currently advocating for both the Treat and Reduce Obesity Act and the Lymphedema Treatment Act. My story is a powerful illustration of the need for both pieces of legislation.

About the Author:
Sarah Bramblette has been a member of Obesity Action Coalition since June 2012. She is a lipedema, lymphedema, obesity, and health insurance advocate and blogs about her life experiences at Sarah is currently working toward a master’s degree in health law.

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