Welcome to the Lymphedema Treatment Act Blog!

by Heather on February 12, 2018

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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Cheryl’s Story

by Heather on 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 in two drug trials with Stanford including the most recent Ubenimex drug trial to help Dr. Rockson find a cure or better therapies for lymphedema patients. Being treated like dirt by the health insurance industry has been an horrible experience. My blog is www.LymphedemaSucks.com

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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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