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.

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Linda’s Story

by Heather on 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 asked about it had no idea what could be causing this condition and brushed it off as being of no concern. Around 2009, I saw a rheumatologist, a dermatologist, and a neurologist, and only the dermatologist offered a suggestion, that my arm contained excess collagen.

My forearm was becoming more swollen and the skin was stretching, to the point that I was beginning to wonder whether someday only loose sweatshirts would fit over my arm. In 2011, my arm suddenly became blotchy red and itchy and even more swollen, the puffiness extending into my hand. I returned to the dermatologist’s office, insisting that someone needed to determine what was causing this. He convened some colleagues and one of them suggested lymphedema. I then saw a lymphedema therapist for several weeks. She massaged my arm and taught me how to wrap it in bandages and foam wrap for compression while I was waiting for my customized compression sleeves to arrive in the mail. My arm lost considerable volume due to her massage therapy and the compression wrapping. It took me half an hour to wrap my arm every day, plus time to hand wash the bandages, so I was very relieved when my compression sleeves finally arrived.

My treatment was covered under my medical plan at the time. The therapist told me that the treatment cost about $700 . She maintains that a lymphedema patient should receive therapy as a a sort of tune-up every year or two, but no medical plan covers more than one course of therapy. All of the treatment, the wrapping, two sleeves and gauntlets for daytime, and one sleeve for nighttime cost me only $457 because I had a good medical plan at the time.

Now my current medical plan does not cover durable medical equipment at all. Every 6 months, I require two new sleeves for daytime, at $185 each. Every two years or so, I require a new sleeve for nighttime, at $527. My previous medical plan covered durable medical equipment at 80%/20% after my $3,000+ deductible, which was pretty much the same as not covering DME at all. One medical plan that I’ve had covered DME once only, as if lymphedema garments were like crutches, purchased once and all set for life.

I am one of the lucky ones. I don’t even notice my swollen arm anymore, as the sleeves do such an effective job. But this is only because I am paying for the sleeves out of my own pocket, an expense that becomes increasingly difficult to afford. I am 54 years old and will need to buy many more sleeves in my lifetime. Without them, this condition that I don’t notice anymore would worsen, exactly as was happening prior to my treatment. We need better insurance coverage for lymphedema garments, recognition that these need to be purchased many times during a lifetime, and increased awareness of this condition among medical professionals.

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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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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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