I first exhibited symptoms of primary lymphedema when I was in high school. Someone signed my yearbook, “Remember me when your ankles swell.” My mother and grandmother both were diagnosed with Milroyce Disease, and I watched them both suffer and do their best to contain the swelling, to no avail, and eventually die of complications related to poor circulation. In my 20s, I approached a research hospital for help. No one had heard of Milroyce Disease and I was referred to the psychiatric division. I have lived on an extremely low sodium diet and kept my legs elevated whenever possible for years. Over-the-counter compression stockings bunch up at my ankles and exacerbate the swelling and inflamation. No one reading this would want to look at my horribly swollen legs.
A few years ago, I found the National Lymphedema Network and, via considerable perseverence, obtained a diagnosis. Now, I am in the process of appealing a denial of coverage with an insurance provider.
Dr. Stanley Rockson at Stanford Medical Center has published extensively about lymphedema and continues his research. Lymphedema affects so many people; surely the time has come for proper recognition as a serious condition that warrants treatment and coverage.
