Hey y’all, it’s me Vern.
Welcome to the Lymphie Strong blog.
First of all, Lymphie Strong is dedicated to my father, affectionately known as Pete, a lifelong Lymphie who lived with primary lower extremity lymphedema of the left leg since 1974. He was the strongest Lymphie I personally knew, and my hero in the daily fight against lymphedema. He lived with it for 43 years with the first 24 years being completely undiagnosed.
This personal blog was created in September of 2015. Sadly, my father passed away on June 29, 2016 from cancer. While I am devastated at the loss of my father, I am comforted that part of his legacy will live on in helping others with lymphedema.
I have had a rare form of genetic Lymphedema called Lymphedema–distichiasis syndrome which presented in 1994 in both legs (bilateral lower extremity) and now truncal in my back as of January 2016. This was confirmed in May 2016. Although I was aware that I was primary, I did not know about being this specific type. Since this is so rare, I will also post my personal journey in managing it. On my paternal side, I am the 3rd generation in my family to have this incurable condition. My grandfaher was also bilateral like me.
It important to note that my experience comes from both sides of the spectrum, as I have been mild, then swollen, and have subsequently successfully reduced and reversed from Stage 1. My lymphedema has also moved from one part of my body to another. This is also rare. From lower extremity to now upper, I have gained a completely new perspective. It is physically and emotionally painful. This is a totally new journey for me that I will document as I navigate the trial and error phase of reduction and maintenance.
Everyone is unique. There is no “one size fits all” solution or experience with lymphedema. This not medical advice, and I am by no means a lymphedema expert with any professional medical credentials. I am just a patient dedicated to this as a cause and hope you find inspiration and motivation in your fight against lymphedema.
I sincerely pray for a cure for all of us. Together we can all make a difference.
Wishing you great lymphatic health,