Tag Archives: Research

How Washington Can Change Rare Disease: Part One

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This is the first of a four part series leading up to my trip to Washington DC for Rare Disease Week. I want to highlight some issues in the rare disease community with regards to STEM education in the United States and how it can impact our lives. It is obvious to say that scientists, engineers, mathematicians and technology experts are important for our country. However, they are vital to the rare disease community, and we need to encourage people to explore STEM related occupations. Continue reading →

Becoming Your Own Detective

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I document every blood draw with photos for comparison. Strange documentation, but I hope one day I can use the data to benefit other ITP patients.

 

The question rare disease patients ask all the time, WHY? I started reflecting over the holidays about everything I went through last year. 2014 was the final time I would ever define myself as ‘healthy’ until being diagnosed with ITP. 2015 will be my first full year being ‘sick’. While it may seem silly, these things really struck a cord with me. It boiled down to ‘why me’? Why did I get sick? Why did it happen at 27? Incidentally, I started to become a detective. I started researching genetics, immune disorders, rare diseases, etc. I was relieved to find out I’m not the only one!

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