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?
The truth is, it can happen to anyone. Becoming a rare disease warrior was a choice, having a rare disease was not. Until May 1st, 2014 I thought rare diseases were only linked to genetic issues, my ignorance showed me! I was pushed into a world with a lot of questions and few answers. Overwhelming side effects, but few effective treatments. I spent some days laying in bed and wondering if it would have been better if I just died, or I got cancer. I felt it would have been easier to have an opponent that people could relate to, doctors could treat and I could discuss. When the enemy is your own immune system and blood is involved, people tend to stay away.
I’m not saying that everyone can get ITP, truth is we don’t have enough information to understand how it works. Not everyone will have a rare disease, but as many as 1 in 10 Americans do. Chances are, every single one of us knows someone fighting this battle. Some people choose to deal with it privately, and that is okay. I can’t stay silent about what I’ve been through because I enjoyed many years of living a life with no limitations. Now, I want to push the limits so every rare disease warrior can live life to the fullest. I remember what it was like to wake up every day and worry about how well the Noles were going to play on Saturday. Now I wake up and hope that I’m not covered in bruises and blood.
This has to change.
The 21st Century Cures initiative will change medicine for everyone, rare or not. It is critical legislation that can drastically improve innovation for new drugs and devices. This isn’t just for the rare disease community, it is for everyone! Congressman Fred Upton, the chair of the Energy and Commerce Committee with Congresswoman Diana DeGette have made the initial push to reform discovery, development and delivery of drugs and devices. Other members of Congress such as Gus Bilirakis have introduced bills that would continue to push reform and innovation without costing tax payers extra money.
What can you do to help? Write to your Representative and ask for their support of the OPEN ACT. This is the first piece of legislation that will push us in the right direction for medical innovation in America. It is a bi-partisan bill that will benefit all Americans for years to come. We have some of the best doctors and researchers in the world, yet our laws limit their abilities to continually work towards finding new treatments and cures.
This will help America continue to be a global leader in medicine!