I’m so excited to update everyone on the Orphan Product Extensions Now Accelerating Cures and Treatments (HR 971) bill that was introduced in February. This week, Alcee Hastings (D-FL20) and Rodney Davis (R-IL13) signed on as co-sponsors!
I encourage all members of the rare community to continue contacting their Congressional representatives and encourage them to support this bill!
I wish I could clone Dr. Ahn a few times!
Since becoming a rare disease patient, I have formed relationships with doctors that go beyond just seeing them once a year. My hematologist Dr. Ahn is my lifesaver, I view him as a guardian angel. I also have an amazing OB/GYN, Tara Solomon. Dr. Solomon was the first one to discover how low my platelets were, and she also went above and beyond to help me in every way possible after being diagnosed. Without these two amazing people, I might be dead. Continue reading
I attempt to keep my paper data organized with folders.
Sharing patient data is a hot topic right now. With HIPAA being misunderstood by many people and the fear of privacy being violated, most people cringe at the thought of releasing their health information to others. What if I told you that by donating your data and remaining anonymous, you could potentially save the lives of other people? In the rare disease community, this is how many people think. If you don’t think this way, I’m here to tell you why you should. Continue reading
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.
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
In the last few weeks, you have probably seen my posts on Twitter, Facebook and Instagram about HR 971, the OPEN ACT. After meeting with Congressman Bilirakis and discussing the bill, I am throwing 110% of my efforts behind making sure it passes. Continue reading
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.
Check out my guest feature on Everyday Health. I discuss what led to my decision to use Rituxan to treat Immune Thrombocytopenia.
President Obama announced the Precision Medicine Initiative to a room full of doctors and representatives from the healthcare industry. While this is an exciting time for patients dealing with various forms of cancer and other conditions, noticeably absent from the plan was the rare disease community. In fact, I have yet to really encounter anything from the PMI that focuses on researching rare diseases despite all the rhetoric with understanding genetics and how medicine can taylor treatments to suit an individual.
If you told me in May 2014 that I would complete a 5k nine months later, I would be shocked. In fact, I would probably think you were crazy. I thought that because I was diagnosed with immune thrombocytopenia, my life was over. There was no hope, only an endless battle with needles and platelet counts. Today I proved myself wrong, and it felt so good! Continue reading