Ellen’s Story

by Heather on May 20, 2016

My lymphedema story began over 50 years ago with the sudden onset of lymphedema when I was 12. An ice skater, the swelling was first noticed by a family friend who had come to watch me skate and noticed that my upper right thigh was swollen. Over the next month, the swelling steadily and severely progressed until my entire leg and foot were swollen. It took some time before receiving the difficult diagnosis that I had a form of congenital lymphedema that starts at puberty. My life as I knew it changed dramatically as I learned to care for this challenging disease. As a member of my skating club, I had passed several skating tests and was a featured soloist in ice shows, an activity that I was determined to continue even as I struggled with the swelling in my leg and its heaviness. I realized eventually that I would need to stop skating, which was a big adjustment in that skating had been such a central part of my life. After a number of years, swelling began in my left leg and foot as well; however, the swelling in my right leg and foot was always significantly greater. 

As part of trying to reduce the swelling, I spent countless hours using a compression machine for my legs and learned to sleep with my legs elevated and wrapped with compression bandages. As a teenager and young adult, I was self conscious about the size of my large right leg in comparison with my smaller left leg. Due to the combination of supports that I wear, my legs have equalized, although my right leg is still somewhat larger than my left. Going shopping for shoes is still one of my least enjoyable activities both because of the swelling and also because int is hard to find shoes that are both comfortable and stylish. Even with my meticulous skin care, I developed three infections over the years, which were treated with an antibiotic and bedrest. Hot weather is challenging for me in that after walking outdoors, I can perspire and develop a heat rash under my supports, which can become an infection. I monitor my feet and legs carefully, always vigilant about any skin issues that could become an infection. Because of the toll that the swelling has taken on my feet and especially my toes, I have an appointment with my podiatrist every three-four weeks for care of toenails and feet in an effort to minimize the possibility of infection. 

Throughout the time in which I have had lymphedema, I have relied on compression gradient support stockings. To control the severe swelling in my legs and feet, I must wear two sets of supports on each leg daily as part of my leg and foot care regimen. Without the medically essential, doctor-prescribed supports, my mobility would be severely curtailed and the risk of infection would be significantly increased. I am dependent on them just as a person who has a prosthetic or wears a leg brace is dependent on those devices. 

When I retired a couple of years ago, I was shocked to learn that I would no longer have insurance coverage for my supports. Because Medicare does not cover them, my supplemental insurer does not cover them either. My fervent hope is that this is the year in which the Lymphedema Treatment Act is passed, a bill that is vitally important to all of us who have lymphedema whether due to a congenital or surgical cause, whether affecting legs, arms or other areas — whatever the cause, whatever the area affected, the coverage that this bill will mandate is essential.

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