The last day of February holds a lot of significance to me and others who have rare illnesses. February 28th (or 29th on leap years) is recognized as Rare Disease Day, a worldwide day of awareness for rare diseases and their impact on patient lives.
According to the Rare Disease Day organization, roughly 300 million people in the world have rare diseases. That’s equivalent to an entire population of the 3rd largest country in the world. And there are more than 6,000 diseases that are identified as rare. A disease is classified as rare when it affects fewer than 1 in 2,000 people.
I found out I was #rare in 2019 when I was diagnosed with lymphangioleiomyomatosis (LAM). I am just one of those people and LAM is just one of those diseases.
But being #rare is more than just a diagnosis to me. It means being a representative of my disease and being a voice for it and other rare diseases. Now, more than ever, it is crucial to raise awareness and maintain the support systems in place, such as public health agency resources, biomedical research funding, and more. And by sharing my story and advocating for rare disease priorities, I am part of a ripple effect that can maintain these systems and hopefully lead to even better resources and medical advancements.
To help raise awareness, I host an annual Rare Disease Day Stream on my Twitch channel. While playing video games is at the forefront of the stream, I also devote time to discuss the importance of Rare Disease Day and what you can do to help. If you are unable to tune in to my stream, you can visit any of the links below to learn more.
Help be part of this incredible movement by sharing my story or a loved one’s story!
Gamerprincess92 
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