Rare Disease and Chronic Illness – How to React to Ignorance

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Let’s be honest, we have all heard people say things that make us want to punch a wall. I can recall a few situations in particular where I am not exactly sure how I kept my cool. Especially during the times I was experiencing roid rage. But how do you respond in these situations? I look at them as a chance to educate the ignorant.  Continue reading

Fitness Tracker Data, Support for Rare & Autoimmune Diseases

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The number on the scale predicts my mood each morning. The less I weigh, the happier I am. If that number goes up, I generally start my day off disappointed. I’m fighting every hour, every meal, to get rid of the weight prednisone gave me. Since it situated in my midsection, I feel 1000 times larger than I am. A nice daily reminder of how much I hate steroids! Continue reading

How Washington Can Change Rare Disease: Part Three

laid-offWhen I was diagnosed last May with ITP, I had no idea I was about to be tossed out of my job by my employer. When I was hospitalized, I wrongly assumed that the company I worked so hard for would back me up. So when I was laid off, I felt like my world was crumbling around me. How would I pay my bills? What about my health insurance? Could I qualify for disability? There were few real answers for me. Continue reading

Treatment and Weight Gain: The Saga

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I officially gained a whopping 25lbs after all my treatments from May through December. For many people, this may seem minor, for others it is shocking. I am surprised at how my body reacted to repeated increases in prednisone. The weight was not evenly distributed. It ended up sitting around my stomach, love handles, butt and thighs. For a size comparison, I went into the hospital a 4. I am now stretching a size 10! Weight issues seem to go on the back burner for rare and autoimmune disease patients, but I want to bring attention to it. Continue reading

How Washington Can Change Rare Disease: Part Two

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Part two of my series on how Washington can improve the lives of rare disease patients is discussing the Affordable Care Act, aka Obamacare. There has been a lot of controversy surrounding the legislation. While some good things have come out of it, there are numerous revisions that need to be made in order for it to truly help rare patients and their families.

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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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