Why I Run as a Von Hippel-Lindau Syndrome Warrior


My name is Shawn I am a VHL warrior! My journey started long before I was diagnosed with VHL, or von Hippel-Lindau syndrome. My father had VHL and I remember he and my mother traveling to Boston, MA from our rural town in northeastern Pennsylvania for brain surgeries. They would often be gone for a month or longer.

I remember when my brother, Brian, was diagnosed. He had a cerebellar hemangioblastoma and he too started making the long trek to Boston with my mother. My cousin also had VHL; his dad (my uncle) had it too. As a child, I don’t think I heard the term von Hippel-Lindau until my dad died on May 15th, 1980. I was 10 years old and it also happened to be my mother’s 43rd birthday. My brother, uncle and cousin have also passed away from VHL.

So where does the journey go from here? As a young adult, 19-20 years old, I would daydream about somehow being a “voice” for my dad and brother as my dad had passed away. I would picture myself coaching or giving talks about VHL. I was in college and majoring in Secondary English. I would think of ways of incorporating VHL into teaching lessons. I was not sure how I was going to spread the word about VHL but I knew I wanted to make my dad proud. However, I fell back into the mode of feeling like nothing really mattered, as I figured I would die before the age of 40. I was partaking in too much alcohol consumption and needed some “divine intervention.”

Fortunately, I met Kim, my “rock” and angel on earth. We started dating; she accepted me, my VHL and the negatives that came with it. Kim has been with me through good and bad times. Side by side, we cherished the good times and gained strength in the bad, always being grateful.

Soon I started eating healthier and working out with weights, but I hadn’t laced up a pair of shoes and run in nearly 20 years. Well, it didn’t take long for me to hit the “mill,” running for no other reason than trying to outrun what I knew was inevitable – another brain surgery. So I ran to help deal with the anger and fear. Physically, I felt stronger and mentally, I made the switch from running out of fear to facing the fear and not giving in. My fear was replaced with a new belief: a belief in myself, a belief that if I took care of my body and prepared it for battle, it would take care of me and get me through surgery.

husband and wife wearing blue hoodies and medals after running a race

It is funny how my thoughts and perhaps my dreams have brought me to where I am today. I qualified for the Boston Marathon in 2015 and I am the administrator of two media pages with a total of nearly 13,000 followers that I use as a platform to help spread awareness of VHL using the tag #VHLWARRIOR. Don’t let VHL take your dreams or your attitude from you. It has taken a lot from me and my family, but there are some things it will never conquer.

This post originally appeared on VHL Alliance.

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