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A letter to the American Medical Association (AMA) from Olivia Eggers

Dear Dr. Madara, 

My name is Olivia Eggers and I am a 23-year-old woman living with primary lymphedema (LE). I was born with this condition but was officially diagnosed with LE when I was 9 months old. I have an extremely rare form of LE as it affects my entire body due to my lymphatic system not forming properly in utero. I have swelling in my eyes, face, hands, arms, legs, and feet. I have been wearing compression stockings since I was 2 years old to try to lessen my edema. My condition is physically painful and emotionally exhausting.

Throughout my life my parents and I looked everywhere for answers, hoping for anything that could help improve my quality of life. We knew so little about the condition and every doctor we met with seemed to know even less. Most medical professionals that I have met have had no prior knowledge of lymphedema. Some doctors have been exceptionally cruel, poking fun at my condition and ridiculing me for my above-average BMI. When I was 15, my primary care doctor informed me that I was morbidly obese and needed to lose weight. I asked if all of the excess water weight that I have in my legs could be a reason for my high BMI. She disregarded my question, saying that the problem lay in my eating habits and sent me on my way with nothing but a slip about my BMI. I left that appointment with a newly developed eating disorder that still affects me nine years later. 

During one hospital visit, which was prompted by fever and consistent vomiting (a telltale sign of cellulitis, a serious bacterial infection that is common with my condition and that has almost taken my life on multiple occasions), an attending physician came into my room, gestured at my swollen arm and said, "I hear you're like this all of the time so I don't know what we can do for you." Thankfully, I only had a stomach bug and recovered but his insensitivity hit me hard and reaffirmed my distrust for the medical system. 

Managing my lymphedema is expensive (compression stockings cost thousands of dollars and many insurances don't cover them), physically demanding, time-consuming, and mentally exhausting. I am completely burnt out and I am only 23. I have been told time and time again that my condition will only worsen as I age. One doctor predicted that I would be "wheelchair-bound" or need amputation by the time I reached age thirty. No matter what my future may be, it is evident that there are improvements that can be made in the medical system. 

The medical system has a responsibility to learn about lymphatic diseases and to offer better care, treatment, and resources for patients with these conditions. It is terrifying to have a condition that causes so much pain and hardship but it's even scarier to ask for help from a doctor and to be shamed for your disease. 

My hope with this letter is that you will hear the truth behind my words and take action to address the prejudices in the medical community. Millions of people are afflicted with LE and all of us deserve kindness and care. I hope that you agree and take action to make a difference.

Lastly, I wrote "Living with Lymphedema," that further details my experience. I hope you will read it and use it for further education and awareness.  

Thank you for taking the time to read this. 

Sincerely,
Olivia Eggers