vhl alliance

Embracing the VHL Community

by Deanna W.

For me, VHL is a lonely disease. I was diagnosed in 1992, first in family. In the 25 years since, I’ve heard many doctors say, “In med school I learned about VHL but was told I’d never have a patient with it!”

Even though I’ve worked with doctors who consider VHL a specialty, in all these years I never met another VHL patient! In fact, until the summer of 2016, when I learned of the VHL Alliance and the monthly patient support calls, I had never even spoken with another VHL patient!

I decided to become more deeply involved with VHL and became a Chapter Leader in February, 2017. My first challenge as a Chapter Leader came with VHL Awareness Month in May. I set my goal to do a fundraiser, raise $1000, and more importantly, raise awareness of VHL. I worked with my employer and received permission to ask my coworkers to support my fundraiser!

Imagine my surprise when I received an email not even 2 minutes after the email went out from a coworker saying, “my wife has VHL!”

Fast forward to the date of my fundraiser- a day in which my family, friends, and coworkers supported me. Something that is much more profound to me than the money I raised! I hit my goal, by the way! In fact I ended up earning $1,345 – not bad for my first fundraising attempt.

But most significant to me – for the first time in the 25 years since my diagnosis, I met another person with VHL.

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