Welcome to the Lymphedema Treatment Act Blog!

by Heather on April 14, 2022

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!

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Barbara’s Story

by Heather on April 14, 2022

Six years this August, I will have this condition. I don’t know what caused it. I went to bed one evening and when I got up the next morning my left leg was swollen and red. I don’t know why I have this swelling. It affects my physical health because I can’t stand on it very long, and I can’t walk on it without pain. I can’t walk long distances without having to stop and rest for a while. It has also affected my mental health, too, because I feel like I can’t do anything like I used to. It has affected my whole family because they never know when I will have another infection or end up in the hospital again due to an infection. I have been in the hospital several times due to infections and one time I was in the hospital with sepsis. Just last year, between the months of November and December,  I was in the hospital three times within a month’s time.

I would like for this bill to be passed so people like me can get the necessary items or equipment so we can try to live a somewhat normal life. I had never heard of this disease until I got it. I have seen so many doctors in almost six years and no doctor can figure out why I have it. Just this month I am having my right leg wrapped. Passing this bill will help so many people be more educated on this disease and understand why we have to fight to get our supplies paid for. Thank you for your time and may God bless you.

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Jennifer’s Story

March 7, 2022

I was diagnosed with Breast Cancer in September 2020 at forty-four years old. After I completed radiation treatment, I found it difficult to move and use my right arm and hand due to swelling in my breast and armpit. I was very vocal to my medical team about this concern. Especially as a single mother […]

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Sarah’s Story

March 4, 2022

As I entered year 4 as a cervical cancer survivor I developed severe lymphedema. It came on quickly. I was active, a wife, and mother of 3 young children. My swelling came on with a vengeance in my left leg. I was swollen from my toes up to my abdomen. When I had cancer I […]

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Jessica’s Story

November 22, 2021

I am 33 years old and I live in the amazing state of California. In 2019 I was diagnosed with Lymphedema, yea! I am actually excited about this diagnosis as I suspected I actually had COPD. I had been actively avoiding doctors for the last several years as my previous doctor could not see past […]

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Carl’s Story

March 20, 2021

My Lymphedema Story began in December 2007 when I first noticed unexplained swelling in my right foot. A few days later it spread to my left foot and then eventually to my ankles and calves of both legs. Up to this point in my life I was a healthy 46-year-old gay man who never got […]

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Samantha’s Story

March 16, 2021

My lymphedema story started nearly a year ago. I was fortunate to have a breast surgeon that warned & educated me on the possibility of it happening after my lumpectomy, lymph node dissection, & radiation treatment for breast cancer. Up until then I had never heard of it before. I had 23 lymph nodes removed […]

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Wynter’s Story

October 15, 2019

This is my story and how Congress can get help for the MILLIONS of us who are afflicted with Lymphedema. 1. DOCTORS AND HEALTH PROFESSIONALS NEED TRAINING: I had been asking my primary care physician for years to help me with my painfully swollen feet and ankles. He always said I was swollen because I […]

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Karissa’s Story

June 18, 2019

  The challenge here is to bring years of lymphedema struggles into a compressed version, so that you can comprehend my journey as a lymphedema patient. How can I explain it? I’ll start at the beginning, when I was 16 years old. After an allergic reaction complete with full body swelling, not all of the […]

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Irene’s Story

January 29, 2019

Hello my name is Irene and im delighted to share my story. I developed spider veins at the age of 15 and varicose veins a few years after that. Anyway I remember summer of 2001 I woke up and noticed my left ankle was slightly swollen but no pain. I was baffled so when I […]

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Britta’s Story

February 26, 2018

I have had primary bilateral lymphedema for 30 years, since I first noticed swelling in my left foot when I was 13 years old. I was diagnosed 10 years later, after stumbling upon information on the internet that led me to consult with a lymphedema therapist. Fortunately, I have maintained swelling reduction through the daily […]

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Cheryl’s Story

February 12, 2018

I got lymphedema in 2011 after 2010 hysterectomy for cancer. I have had to fight HealthNet for compression garments and had to beg friends to pay for my life extending Suction Assisted Protein Lipectomy to remove 4 liters of poisonous lymphedema sludge in each leg. One in 2014 and one in 2015. I have been […]

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Annetta’s Story

January 23, 2018

I was diagnosed with breast cancer at the age of 52 in February 2014. I had a radical bilateral mastectomy and began breast reconstruction April 2014. Three axillary lymph nodes were removed from my affected right side and were consequently determined to be cancer free. I developed cellulitis of one breast requiring hospitalization May 2014. […]

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Angela’s Story

November 29, 2017

I have primary lymphedema in both legs which became visible when I was about 15 years old, 40 years ago. My story highlights the need for educating professionals in all areas of health care and the amazing success that comes with self-care as well as the sad failure with the lack of self-care. For 35 […]

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Shoshanah’s Story

September 27, 2017

Twelve years ago when I was undergoing treatment for breast cancer (which included chemo, surgery and radiation), the topic of lymphedema never came up. Two years after treatment, I began having radiating pain and inflammation around my torso where I had undergone my surgery and radiation. My doctors thought my pain was part of the […]

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Linda’s Story

May 8, 2017

I suspect that my lymphedema in my right forearm began in 1986 when I fell off my bike riding over railroad tracks, landing on my right arm. The impact probably damaged the lymph nodes. Very gradually over the years, I noticed that my right forearm was becoming wider than my left. Any doctor whom I […]

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Rebecca’s Story

May 8, 2017

I had Stage III breast ccancer 15 years ago. It was a form with a marker that had never responded to Chemotherapy/Radiation. Usually people with that marker died quite soon. I am alive today because a Dr Slamon invented a NEW biological agent Herceptin! I was in the 1st Clinical Trial and Received the medication. […]

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Linda’s Story

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 […]

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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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