Op-ed on the OPEN ACT featuring ITP

I’m honored to have my story mentioned in Congressman Bilirakis’ op-ed piece which is on The Hill today. The 21st Century Cures bill passed the subcommittee by a verbal vote which is incredible!

The link to the article is here. Be sure to continue reaching out to your representatives and encouraging them to support the 21st Century Cures legislation!

The Fear of Remission Ending

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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How Washington Can Change Rare Disease: Part Four

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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.

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From Fearing To Facing My Rare Disease

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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

What “Being Rare” Has Taught Me

Two weeks before diagnosis.

Two weeks before diagnosis.

They say ignorance is bliss, and I would have to agree. In the weeks leading up to my hospitalization and being diagnosed with a rare disease, the last thing I thought about was anything health related. I was more focused on work and the daily stresses of life. Then when my world came crashing down, my focus was forced to shift. All of the sudden, I had to live day by day. I was no longer working for the weekend (be honest, you started singing that song in your head), the things that take up my time had to be carefully considered. These last 7 1/2 months have given me some interesting lessons. Continue reading

Rare Disease & Relationships: Challenges

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There are a lot of topics that aren’t covered when it comes to rare diseases. One of which is relationships. Exactly what happens when one person becomes sick? Is the relationship complicated based on time spent together? Martial status? Which person gets sick? There are so many dynamics, it is impossible to discuss every possibility. I can only speak from experience on this. Bottom line, it is the most extreme challenge that any couple can face.

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Diagnosed With A Rare Disease, What Now?

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Cinco De Mayo in the hospital, my mom won a gift basket!

I see this question all over the internet. I was just told I have a rare disease, what do I do? Who do I turn to? What medications should I take? Am I going to die? There is no step by step guide to how to handle these issues. We don’t even have a set course of treatment for most conditions, everyone is different! And yes, you can die. At some point every single one of us will. You just cannot live in the shadow of that fear because it will not help you excel in your day to day activities.  Continue reading

Healing Power of Pets

Happy Holidays From Kona!

Happy Holidays From Kona!

I have always loved animals, but the bond I’ve shared with my dog is extra special. Kona is sort of like a small child, she requires constant attention and loves to be right next to me no matter what I’m doing. When I got sick, all I wanted was to get out of the hospital and see her, so when the therapy dogs came around each day I was very excited! It made me realize just how great of an impact animals can make in the healing process.  Continue reading

Rituxan Finale!

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I am happy to report that I completed my final round of Rituxan yesterday. My platelets were at an impressive 193,000, a nice number considering I am continuing to drop off the prednisone. I should be off that completely by next Thursday. Then I will wait for my adrenal glands to start working again, after a nice 7 1/2 month vacation. In addition to that, there are further challenges ahead.  Continue reading