Stronger Together – An open letter to the lymphedema community

Life With Lymphedema

One of the major reasons that we wanted to start this blog was to bring together primary and secondary lymphedema in the same place. We understand that there are some differences in our challenges, but we will never lose sight of the emotional side that connects us. Encouragement towards one another makes us stronger as people and friends. We grow from our struggles and thrive with the success of managing our lymphedema together.

It is discouraging to hear people complain that cancer-related lymphedema gets too much attention in the media. We understand that it is frustrating for people with primary lymphedema to feel ignored. The reality is that primary lymphedema is much harder to diagnose. It is less likely to have an obvious cause and it can show up a different times in a person’s life. However, we believe that the major point is often missed: LYMPHEDEMA IS BEING TALKED…

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3 thoughts on “Stronger Together – An open letter to the lymphedema community

  1. I think Dr. Oz would be a great voice for LE. He is a physician and knowledgeable about the physiology of this little known and only minimally understood complex disorder that affects such a huge number of us nationwide. We are all pioneers in this disease and must find a way to give LE a voice.

  2. I have been turned away from specialty cancer centers in my state because I have primary Lymphedema and my Lymphedema was not caused by cancer. Many people who need help aren’t getting it because of this “cancer” link. I wish they would open their doors to primary Lymphedema sufferers too. Mine is progressing and I feel I am getting “old school” treatment versus cutting edge treatments. I wish the medical community would focus their attention on ALL sufferers.

    • It is a long hard fight that everyone needs to be a part of… Getting the laws changed.. Building awareness.. We must keep fighting for everyone who has Lymphedema no matter what the cause.. Stay strong ….

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