Call to action

Lately, I’ve been experiencing a bit of a writing block. With starting my first full-time job and studying for my license exam, I haven’t had a lot of free time to just sit down and write. It can become hard to pursue your hobbies throughout a busy life. The reason this blog is so important to me is because it’s a way for me to share my own personal experiences so others can learn or relate as well as share resources and knowledge to both those affected and not affected by rare diseases to keep others informed. With how little known my disease is, I’d like to think that just a simple, mediocre blog like mine can act as a resource to some people that otherwise wouldn’t be available to them. The resources are so very limited for so many rare diseases–and what are available are mostly medical resources that only really discuss the medical parameters of the disease, more so than the social aspect. While those resources are incredibly important, I think having a platform to express and share stories and experiences with a particularly rare disease is just as essential. Anyway, I’m just hoping that this blog has reached at least a few people and hopefully benefitted in some way, even in the smallest way. And I truly do appreciate every single person who does take the time to read my blog, whether it reaches them or not. So thank you.

Moving forward, I wanted to talk about a really important day coming up at the end of this month: Rare Disease Day. I’ve talked about it before, but I think it’s worth another brief post this year. The theme this year is “Show Your Stripes,” and evidently the zebra is the official symbol of rare diseases in the U.S. (this is news to me)! Because of the unique stripes on zebras, it represents how unique each rare disease is as well as each individual diagnosed with a rare disease. I couldn’t agree more with this symbol, as one of the significant factors that impact us with rare diseases is our uniqueness from others.

While to some this may be a negative factor, I believe having a difference like this is strengthening. We are different and have a journey we’ve embarked on in life that brings on particular adversities and, with those, victories. We don’t have it easy, that’s for sure, but to march through life with a rare disease means we are living a life a little different than the average person: we are winning battles, we are surviving, we are conquering life. And with those victories, we are becoming stronger. It is through adversity that we learn, grow, and shape ourselves into who we want to become. I stumbled upon a quote recently that I believe captures the challenging journey those with rare diseases have (and many others I’m sure):

“Challenge and adversity are meant to help you know who you are. Storms hit your weakness, but unlock your true strength.”   

-Roy T. Bennett

Everyone is going to experience challenges in their life, and people with rare diseases are especially familiar with that experience. While it may sometimes hinder our ability to think positively or make our outlook on life a little darker, it forces us to reach within ourselves for the strength and willpower that we know we have to overcome each and every adversity. Sometimes, we just have to reach way way down.

Another unique factor of rare diseases is that they demand the need for action to be taken in order for progress to be made. Because of how rare these diseases are, there is very little research done on them which in turn leads there to be less medical interventions, treatments, and cures. It can be incredibly difficult to manage a disease when there is very little known about it or potential treatments. Rare Disease Day is important because this is a day for the world to come together and speak out on what it’s like to live with rare diseases. It opens up the platform for people to share their stories, express how rare diseases impact them, and advocate for the need for research. By coming together, we hope to reach decision-makers in order for real, effective action to be taken.

We should be advocating for rare diseases year-round, but this day is the moment where we can all come together to bring as much attention to rare diseases as possible. And it’s not just people with rare diseases that can take part, it’s everyone–families, health professionals, drug developers, researchers, public health authorities, patient organizations. Spreading awareness on Rare Disease Day as well as all the days leading up to it can make an impact, whether large or small. There are many ways to participate! Spread the word and join the campaign here.


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