Welcome to the Lymphedema Treatment Act Blog!

by Heather on September 27, 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!

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Shoshanah’s Story

by Heather on 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 healing process. It continued and I became frustrated and depressed because of my limited mobility and pain.

Four years after I finished treatment, I traveled to New Zealand. Upon my return I experienced shooting pain in my torso and back. My left arm and hand on the side where I had my surgery, became swollen almost 3 times normal size. My doctors just prescribed pain meds. Having had less than 8 lymph nodes removed during surgery, did not put me on the radar for lymphedema.

I spent the next few months convinced that I was never going to find answers and solutions for my pain. During a breast cancer mentor training program, another survivor and M.D. discussed her diagnoses of lymphedema of the arm and hand, but of the torso as well. I said, “Those symptoms are identical to mine”. I was fortunate to learn that also in attendance was one of the best lymphedema therapists in my area. I made an appointment to see her.

The process of reducing the inflammation was a difficult and painful one. For almost a year, I went for therapy and treatment weekly. I had to wrap my arm and hand in bandages; at night I had to wear what looked like an oven mitt that covered my arm and hand. I started to wear compression sleeves and a hand gauntlet. Slowly the pain and inflammation subsided. However, I needed compression on my torso and my search for the right bra took over 3 years.

There is no cure for lymphedema. I was taught how to do MLD (Manual Lymphatic Drainage) therapy for my arm and hand, but there is no other way to relieve lymphedema in my torso without a compression bra. I get flare ups and have had treatment for this condition numerous times, along with cellulitis, which can trigger sepsis.

Education is key. Had my doctors known more about the symptoms, it would have saved me years of pain. I learned from my experience that higher altitudes (flying or being in the mountains) for a prolonged period of time, and having surgery and radiation, were all contributing factors for my developing lymphedema.

Going through cancer is life altering. The financial aspects are even worse. We lost all of our savings and almost went bankrupt. To know that proper therapy and compression garments can help someone with their quality of life is extraordinary. To not be able to afford what is needed is criminal. Through my experience, I am speaking out and taking action. Thank you for your support in this endeavor, and please pass the needed legislation.

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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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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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