There is a lot of controversy surrounding Genetically Modified Organisms (GMOs) and their impact on our health. In the months leading up to being diagnosed with ITP, I was eating an entirely organic diet. Since my disease was triggered by toxic chemical exposure, the food I was eating did little to keep ITP away. Now that I have a chronic illness, my choices in food have changed dramatically. Don’t let the hype from either side of the aisle sway you too much, just look at the basic facts. You never know if this could be making your disease worse!
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When I was finally done with my Rituxan treatments and my doctor declared it a success, I was so relieved. Finally I felt like I had some control over ITP. Then I inquired about how long my remission would last. I was warned that after about 9 months, my body will start to produce new working cells that Rituxan had disabled. I referenced my calendar and saw that it would be close to my 29th birthday. Now every day I wake up, I think about this upcoming date.
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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 →