Vern from the United States
If you have Lymphedema, always remember that you are braver and stronger than you think. You are not alone with this disease. My site, Lymphie Strong, was created to give hope and inspiration to those living with lymphatic disease. I went public for the first time with my primary Lymphedema in both legs in 2015 after I successfully reduced my swelling enough to be able to wear shoes again and ran 8 5K races that following year.
Lymphedema has run in my family for 3 generations and approximately over 100 years. We carry the genetic markers for Lymphedema Distichiasis. So many advancements were made in healthcare during that timeframe, and lymphatic biology was completely neglected. In the meantime, I grew up watching lymphedema try to destroy my father, and he, in turn, watched it affect my grandfather. Some of my earliest memories are of my father fighting many of his toughest cellulitis battles almost to the death in the 80’s and 90’s and yet somehow survived by the grace of God. The only way to survive this incurable disease is to be strong. It’s about standing up to Lymphedema with all of your faith, power, and might.
In 1984, I was 10 years old when I had my first bout of cellulitis from a cat scratch. Ten years later, I personally developed lymphedema in 1994 and for 20 years I stoically managed it, some years in denial, and mostly in despair that there was any hope for advancements for this disease that nobody ever knew about. Then in 2014 I found the correct treatment I needed. An opportunity that my father was denied for over two decades. He died in 2016 waiting for a cure. However, our story doesn’t end there. Right now I’m in the fight for our lives and the race for a cure along with my uncle and two first cousins spread out from Texas to California. That makes total of six family members so far have been impacted to date. We are moving forward together.
So thrilled to now be part of the Xpandasox family as the American Ambassador. We are united, along with the Lymphatic Education & Research Network to find a cure for this disease. I am on a mission to help as many people as possible get connected with education, treatment, and advocacy opportunities. Whether it is through the NLN, LTA, or Lighthouse Lymphedema Network, we have connections across the United States and beyond.
Once upon a time, I was diagnosed when I saw a billboard on a freeway that had two legs that looked like my Dad’s one leg. Now Lymphie Strong is a global billboard. You are welcome to join my online support sites on Facebook called the Official Lymphie Strong Inspiration Group, The Lymphedema Running & Fitness Club, and The Lymphedema Table – For Lymphies and Their Food. You may follow me on Facebook, Twitter, and Instagram as @LymphieStrong. Join the thousands of people who already understand what it is to face this disease head on and fight back.
Wishing you great lymphatic health,
Founder of Lymphie Strong