Help support the National Lymphedema Network!

The Lymphie Life

Throughout the month of May, the National Lymphedema Network is running their second annual Stomp Out Lymphedema virtual walk to raise money for lymphedema education and awareness. “While the field of lymphology has come a long way, countless patients with lymphedema and other lymphatic disorders remain largely unheard,” according to the NLN. “Patients continue to be misdiagnosed or worse—ignored. The Lymphedema Awareness Campaign’s goal is to change that.”

Last year, the NLN raised almost $20,000 to launch various initiatives through their Lymphedema Awareness Campaign. These projects included educational videos and free education kits to be distributed to recently diagnosed cancer patients in efforts to spread awareness about lymphedema before it develops, and to give them the proper knowledge if it does. This work is invaluable in empowering lymphedema patients and educating the medical community.

The NLN are in the midst of this year’s fundraiser and, with about two weeks left…

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4 thoughts on “Help support the National Lymphedema Network!

  1. I am beginning my countdown to June 19, 2015 which is my surgical date for a lymph node transplant and the lymphaticovenous bypass with Dr. David Chang at the University of Chicago Medical Center. I initially found out about Dr. Chang from this blog on which I am presently writing. I am so grateful for the support and the commeraderie I have received on this blog-The tears, feelings of hopelessness/helplessness, not to mention the loss of body image was something I had not experienced before. Once I read about Dr. Chang from this blog,(he was originally from the MD Anderson Cancer Center in Houston, Texas) I felt my first rays of hope. For this reason, I vowed that I would share my story so that I could help others–so others will not give up searching for a more permanent solution instead of the countless conservative measures that we Lymphies must endure.
    I want to share my experience as I go along so I don’t forget anything.

    I went for an evaluation with Dr. Chang in September-a lymphoscintigraphy is a test where dye is injected between the toes to determine where the lymph nodes stop draining. After being told that the drainage in my left leg stopped at my knee, I knew I wanted to have the surgical procedure as soon as I could work everything out with my place of employment. I researched to make sure Dr. Chang was in my network for my health insurance, and Thank God he was as was the surgical procedure.

    Dr. Chang emailed his research to me so that I could understand the procedure and what my chances were of getting back to “NORMAL”-All I want is to get my left leg measurements to be similar to my right leg, (which is still normal). The difference in measurement of my left leg to my right leg is about 2 inches bigger in the left thigh, 1 1/2 inches bigger in the left knee and about 2 inches bigger in the left calf. I have been applying wraps, compression garments, bedtime garments, MLD-you name it, I have been the most compliant patient but I really need a more permanent solution—In order for me to put on the Elvarex 1/2 panty 40 mm of mercury compression stocking, I have to sit on the floor with a pair of Playtex purple rubber gloves and pull up this thick stocking even when it is 95 degrees outside. I wear the stocking under my blue jeans as well as under the spandex I wear to the gym. Now finally, even though I know this is a chronic condition and I will always have to wear a compression stocking, I am hoping the amount of compression will decrease after the surgery. Maybe I’ll be able to wear a jobst compression panty hose that has 20-30 mm of mg compression instead of 40 mm. Everyone needs hope-The vascular surgeon here in CT that I confer with occasionally, told me that I should speak on the topic of lymphedema since I have researched this topic so much and feel so passionate about it. While I don’t feel knowledgeable enough or confident enough to talk to a group of people about lymphedema, I would love to help anyone get past the emotional aspect of this chronic disorder. I would love to give this disorder a face-

    A short time ago Sandra Lee from the cooking channel told the world that she was having a bilateral mastectomy. My heart goes out to her because everyone who has cancer will have lymph nodes removed. With the removal of lymph nodes, comes the possibility of LE. I will continue to post information so that I may help others who may be thinking about this procedure. Please Pray for me. God is listening. Thank you-

    • Thank you so much for this, i am going to share it as a post so everyone will be able to read it… I wish you so much luck for the 19th June.. Patience will be needed after to see results but I know you can get through it … Helen xx

  2. Thank you-It warms my heart to know someone is reading my entry-I am healthy and the only surgery I have had is the initial hysterectomy from 2006 and then the LE began in 2012-I am a registered nurse and I had a feeling I was developing LE but my PCP continued to tell me that LE doesn’t develop 6 yrs later! I insisted that it could. After several tests, it was confirmed but no one guided me into what treatment I should begin. This has been a long journey and now I am on the homestretch. I know it will be 6-8 months until I see some results, but at least, I will know I have done everything there is to do in order to regain the freedom of my life-like wearing a dress again or a skirt again or a lesser compression panty hose instead of the thick one legged 1/2 panty I presently wear. I have been living in sneakers because of the swelling of my left foot. It is very tiresome. When I come home from working a 12 hour shift, my left leg feels rock hard. My husband has to help pull the compression garment off my leg. No one notices this leg except me because I wear slacks or scrub pants when I work, but it feels like an additional 15-20 pounds extra weight with each and every step I take. It has been a difficult 3 years– it is time for a more permanent push to the finish line–I have prayed very hard and followed all of the rules of LE but now is my time. I have kept my weight constant-I do work out at the gym or 4-5 mile brisk walks a couple of times per week- I did a 20 mile bike ride yesterday and last year I did a 68 mile ride for the Smilow Cancer center at Yale-its called “Closer to Free”–I am doing my best not to focus on what has happened. It’s time to be the Victor and not the Victim. I know I am more than a swollen leg and I can not allow it to to define me as a person–We will all get thru this–Liz

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