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.
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
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.