Stories

Living well with Lymphedema

I love my Caregivers by Wanda

I ignored my worsening arthritis and other signs of the aging process. Denial was successful until I developed an infection in my foot. At this point I had to admit that I could no longer reach my feet to not provide my foot care. Also, I had stopped wearing my compression stockings because I could not get them on or off without help. <more...>

A Caregiver Speaks Out by Partner

A caregiver describes how lymphedema affects the lives of those who help others with lymphedema. <more...>

A Special Season by Ingrid

The beauty of fall leaves and a large extended family are my favorite reasons for loving to live in New England -- even if I don't like black flies and mud season.) <more...>

Back to School by BikerBabe

I was born with primary lymphedema (PLE). Most of the time while I was growing up it seemed pretty normal for me to have to go for treatments, wear compression garments, and all of that “stuff.” But now all of that has changed and I don't like it! <more...>

Backpacking and Lymphedema by trisha

Living successfully with lymphedema is a balancing act between being active without overdoing and making the condition worse. The following are the steps I took that made it possible for me to successfully go back packing with my son's Scout troop! <more...>

Dragon Boat Racing by Helena

Dragon Boat Racing is colorful, hard-work, and a wonderful way to say, “Yes I can!” after breast cancer. All over the world women who are lymphedema survivors in every sense of the word are demonstrating their “can do” attitude by taking part in Dragon Boat Racing. <more...>

Few and Far Between by Wanda

We live in beautiful open country where neighbors, and health services, are few and far between. George and I love our life style and things were going really well until I developed lymphedema. Then the need for ongoing treatment created a real problem! <more...>

Friday Night Football by Greg

When I was a little kid my biggest goal was to be one of those players who goes running out onto the football field as the whole town cheers. <more...>

Harley Happiness by Har-Lee

I have a long standing love affair with a Harley (bike that is). Despite cancer and the lymphedema that followed soon the surgery, this affair is still going strong! <more...>

I am New Here

I was born with Lymphedema in my right leg and I am 25 now. I have anxiety and depression due to the effects of growing up with it. <more...>

Ian's Adventures by ProudParents

Soon after Ian was born 10 years ago it became obvious that he had inherited primary lymphedema in both legs. <more...>

Improved Hospital Safety The Story of G-Sleeve

As a hospital patient do you worry that someone will ignore the precautions for your lymphedema at risk arm? A nurse, who shares these worries, has developed a safeguard to better protect these patients. <more...>

Inpatient Lymphedema Care at Siskin Hospital by John Jordi

The Lymph Notes team noticed an increase in the number of inquiries about inpatient treatment for lymphedema. One part of the problem is locating an appropriate facility, and another important issue is knowing whether the facility actually provides the specialized program to meet your lymphedema needs.

Our thanks to John Jordi of the Siskin Hospital for Physical Rehabilitation of Chattanooga, TN for providing this information about their inpatient lymphedema treatment program. 

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Just Live With It! by Barbara Pilvin

For four decades now, until I was diagnosed with primary (hereditary) lymphedema, the words "Just Live with it!" were all I was offered. Today, because of insurance limitations, I could easily die from this disease that is treatable and controllable. <more...>

Ladies Always Wore Dresses by Betty

My name is Betty and I’m sharing my story in the hope that others can learn from it. I was born 73 years ago with swelling of my left foot, leg, and part of the left side of my body.

I learned that this is congenital primary lymphedema; however in all of my years, I have never met anyone else with this condition.

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Living with Lymphedema and Noonans Syndrome by monkeygum

I was born with Noonans Syndrome and at the age of 14 years old, I developed Lymphedema in both legs. Now at 17, I'm learning to live with it. <more...>

Lymphedema In My Twenties by cheerlee2121

Lymphedema has caused me to fully apprecaite my life and my health. <more...>

My Fat Arm by Bonnie

 "My Fat Arm" was written by Bonnie Pike, and published in http:www.literarymama.com, which is a publication of reading for the maternally inclined. Bonnie writes about one of many challenges facing a mother with lymphedema while nurturing one of her sons. We thank Bonnie, and the  Literarymama, for permission to reprint this inspiring story. <more...>

My Lymphedema journey by Rebecca C.

Living and dealing with Lymphedema. <more...>

My World Improved in Leaps and Bounds by Chatter

In hospital, at one midnight, I had been told that I would not be alive the following morning. . .to make  peace with God and family. Very scary and sobering . . .to say the least . . . and I was not drinking. <more...>

My Wrapping Saga by JackieDoss

For your pleasure, Jackie has shared the timeline, frustration, and triumph of her struggle with wrapping her own arm. <more...>

River Rafting Fun by RaftingRita

Lymphedema isn't about what you can't do. It is about discovering how to  accomplish the things you really enjoying doing! <more...>

The Case of the Mismatched Feet by Tamiek

I have been from doctor to doctor, and had tests for numerous auto-immune disorders. I've also been told "It's nothing to worry about." <more...>

What Happened to Your Legs? by Moonsoul

I don’t really know how to start. Forever I have been talking to people who just give an odd look when I answer the question of, "Oh dear what did you do to your legs?" I was feeling pretty lost and discouraged, until I found this site. Reading the stories made me cry. Not because I was sad but because I was not alone. <more...>

Happy Family Times by Helena

Cancer, followed by lymphedema, forced me to rethink my priorities. <more...>

Interviews

NLN's Lymph Science Advocacy Program by Ann

Bonnie Pike, the author of this story, and one of the founders of StepUp-SpeakOut, is fulfilling the promise of the LSAP program. If you have questions these programs you can contact Bonnie through the StepUp-SpeakOut website. <more...>

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