Life Being Rare

Sometimes only your dog understands!

Sometimes only your dog understands!

I try not to dwell too much on my “old” life, the part of my journey where everything was simple. It took me a few months to come to terms with reality that it wasn’t just dream, I really was sick and bad things were happening. On top of the drama involving everyone else, there was an internal struggle. I was constantly on the go then suddenly my life dropped to nothing. I was warned about working out, being around any sort of crowd and potentially jeopardizing my health. It was like crashing a race car into a wall, the shift of momentum was brutal. I wasn’t gradually adjusting to a new routine, it was forced on me. That was one aspect of becoming rare that no one could warn me about.

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Why #Cures2015 Should Matter To You

Healthy me, October 2013

Healthy me, October 2013

All it took to radically change my life were five words: you have Immune Thrombocytopenia Purpura. I was four months shy of my 28th birthday. I had been enjoying a very successful career with the largest rental car company in the world. Life was good! Then ITP came into my life and destroyed everything. My job dumped me, I had friends disappear, my mental health suffered and I had to figure out what to do. How could I rebuild my life that I had just started? Why me? Why now? Continue reading

Rare Disease Week in DC

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Discussing the OPEN ACT with Congressman Bilirakis

I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.

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