RARE DISEASE DAY 2015

Did you know that SMA is the most common rare disease in the world? I always enjoy asking people that question because their reactions are something along the lines of, “wait…the most common…rare..oh, that’s kind of a mouthful.” It’s an oxymoron that confuses many, but hey, it’s the facts! Back in August, I was asked to participate in an internationally-recognized event known as Rare Disease Day, an organization that is dedicated to bringing awareness to those living with uncommon disorders and the impact it has on these people’s lives. FullSizeRenderAlthough different in each state/country, the Rare Disease Day event held in Rhode Island occurred this past weekend, and I was incredibly honored to be involved.

Hanging from the walls at Brown University Medical Center in Providence, RI are portraits, painted by local artists, of more than 20 people with rare diseases, and I am happy to say that I am proudly representing Spinal Muscular Atrophy. These portraits, however, are not meant to bring attention to the person’s disease or the pain and struggles their illness may be causing. They are meant to portray the individual, their smiling face, and their bright-eyed, positive outlook on life they have chosen to lead. Throughout the month, doctors, students, and other passersby will pass by these portraits during their daily activities and hopefully take a deeper look at the people before them. Because the people before them are real people. They have a story, and they deserve to be treated equally. They are not just some medical mystery labeled by a case number with a binder full of doctors’ notes and other concerns.

As an adult living with a rare disease, I have witnessed firsthand how often people define us by our disease and other medical ailments. The truth is, though, these people are failing to recognize that the only way we can ever be defined is in the way in which we choose to live. Yes, my rare disease is a part of who I am, but it doesn’t tell me who I have to be. Having the opportunity to participate in an event that showcases just that is an honor and something I am proud to be a part of.

I have SMA, SMA doesn’t have me.

Capture

Artist: Fiona Buchanan 

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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

4 thoughts on “RARE DISEASE DAY 2015

  1. As always, you state it very well! If people took the time to speak with you, they would immediately realize that you are just like everyone else, fun, articulate, very bright, and most of all lovable! I am so proud of your accomplishments as my sweet wonderful niece, not as someone with sma, because as you say, you have sma it doesn’t have you! Love you!!

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