With Rare Disease Day coming up on Feb. 29, one question in particular has been circling the SMA community: “What makes you rare?” Anyone affected by a rare disease is entitled to their opinion. Likewise, everyone is uniquely qualified to comment on the concept of rarity. However, I struggle…
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The first Rare Disease Day was celebrated in Europe in 2008. The United States participated the following year, and by 2019 more than 100 countries had joined in to highlight rare diseases. The special acknowledgment falls annually on the last day of February. This year, that’s the…
Ella is 9 years old. She has a debilitating disease called spinal muscular atrophy (SMA). Her life is difficult at times, and she needs assistance with everyday tasks. She does as much as she can by herself, but ultimately she needs a lot of help. You…
Feb. 29 is Rare Disease Day. On that day people are encouraged to spread awareness about a multitude of rare diseases and conditions, from SMA to cystic fibrosis to Charcot-Marie-Tooth disease. The umbrella…
I’ve been thinking about Rare Disease Day on Feb. 29 for weeks. I’ve been trying to figure out how exactly I’m rare, and in what ways, and how I might address all the weird, rare, exhilaratingly absurd parts of me that make me…
People look at me questioningly upon realizing that I live with my parents at the age of 22. Moving out is often considered a rite of passage. People expect me to do the same, even though many young adults enjoy living at home with their families. I don’t know what…
Ever since Ella’s mom, Lindsay, had an amputation of her lower right leg, I have been in charge of the household. Months later, Lindsay had her left knee replaced. My household duties continued, in addition to my full-time job teaching. Last…
The SMA News Today Forums heard it first, but I’d like to introduce you to my brand new Permobil F3 wheelchair. Her name is Rizzo, and yes, I am one of those crazy people who assign genders and names to their vehicles,…
I’ve been on hiatus from writing about my SMA. Truth be told, I’ve needed to break away from the constant reminder that SMA rules my life. When it wants to, SMA tosses banana peels into any gleaming trajectory I’m traveling. It kicks the sturdy platform from beneath my…
My first experience with the death of someone close to me came shortly after my 16th birthday. A good friend since elementary school, Candy had moved to another state with her parents and younger sister during high school. They returned to Fort Worth, Texas, in early June for…
