Welcome to the Lymphedema Treatment Act Blog!

by Heather on March 16, 2017

On this blog we are featuring stories that have been submitted through our website as part of the My Lymphedema Story campaign.  We hope you are as moved and inspired by these stories as we have been. If you would like to share your story, please click on the “Share your lymphedema story” tab on the left side bar under the “How you can help” menu.

Thanks for your support of the Lymphedema Treatment Act!


Linda’s Story

by Heather on March 16, 2017

I am a breast cancer survivor of 23 years. I developed lymphedema in 1995 one year after having the breast and lymph nodes removed due to the cancer. My first infection of cellulitis was so severe the doctor stated I was fortunate I did not lose my arm. 

I have worn a compression sleeve 23 hours a day since 1995. I use a day sleeve with more compression and a night sleeve with less compression. 

Prior to becoming Medicare eligible my insurance company paid for my garments. Since becoming Medicare eligible they will no longer pay for my garments because Medicare will not pay. The garments are necessary to control the swelling in my arm. If I do not wear the sleeves and massage my arm twice daily, the arm becomes swollen and very painful. 

I have had to limit my yard work and housework because over using the arm makes the swelling way worse and very painful. 

My garments cost $374.00 for two sleeves every six months. As I live on a fixed income this is very costly to me. I have appealed the denials many times and the cost is denied payment. 

The garments need to be replaced every six months as they lose their elasticity. 

I have now developed edema in my legs and am facing the same problem of buying compression garments to reduce the swelling in my legs. 

It is so important that the Lymphedema Treatment Act is passed so we may be treated with the proper care we need to control the edema in our appendages. 

I also have a sister who is going through the same situation as me. She is 81 years old and also a widow and on a fixed income. 

Thank you for your consideration in passing the important ACT. 


Jeff’s Story

March 9, 2017

I have a the perspective of being both a healthcare professional and a patient. My lymphedema story began initially back in 2000-2001; that’s when I first noticed unexplained swelling in my left leg but not my right. It began as just the visualization that my left calf, ankle and foot were noticeably bigger than my […]

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Bill’s Story

September 17, 2016

I’ve been asked to share my story surrounding lymphedema. I’ve hesitated to do so.  This is a serious topic and I don’t take myself that seriously.  Also, it will require me to reveal things about myself that not even my close friends and family are aware of.  I am willing to tell my truth if […]

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Ellen’s Story

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 […]

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Janet’s Story

May 13, 2016

My story begins with my first pregnancy about 32 years ago. While I was pregnant I began to have significant swelling in my left foot. It ached and felt tight. I was told this was common during pregnancy and would be better after the delivery. The swelling in my left foot never went down and […]

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Emma’s Story

February 25, 2016

Hi, I’m Emma and I’m 7. I was born with Lymphedema in my legs and feet, sometimes it moves to my belly too. I don’t like having lymphedema, there’s really nothing good about lymphedema. I’ve been getting a lot of infections this year and they hurt and make me feel really sick. Sometimes even the […]

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Katia’s Story

February 25, 2016

I suffer with Lymphedema and stage 4 Lipedema and my quality of life for the survival compression garments are needed. I have suffered from numerous bouts of cellulitis and other severe infections from my legs dragging ground and getting cut and leading to infections. I also had to stop working from the other health issues […]

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Beverly’s Story

December 7, 2015

I have a mostly unknown, totally misunderstood, incurable, & very lonely condition called lymphedema (LE). Even the medical community don’t know much about it. Both my legs & feet, my right hand, left arm, & left breast are affected. My LE is inherited (but got worse after a fight with cancer in 1994). Family history […]

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Rosemary’s Story

December 4, 2015

I developed lymphedema early in my life and without any identified cause. One day in December 1978, when I was a healthy and active 20 year old, I woke up to find my right leg about twice the size of my left. I assumed it was a temporary condition caused by a long run I […]

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