Rest Is Worth the Hassle of Transfers
I spend the majority of my time in my power wheelchair. Other than my weekly water therapy sessions, I’m usually in my chair from when I get up in the morning to when I go to bed at night. My…
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Ella Has Her Hair Tips Colored Purple
At 9 years old, Ella is at the age in which she has become more concerned with her looks. And by the way, she has a crush on a boy at school! When her brother, Henry, came home last week with highlights in his hair,…
The Music That Made Me
The music of Bruce Springsteen, David Bowie, and a bunch of movie soundtracks regularly play in the background of my home office. Thanks to Amazon Alexa technology, I can easily control my music and podcasts with simple voice commands. I always like to listen to…
Celebrating My Zebra Spots on Rare Disease Day
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my life. But when I think of zebras, I think of one brilliant doctor, whose comical bedside…
Discovering Sexual Wellness and Intimacy as a Woman with SMA
“So, Katie, how’s your sex life going? Any concerns there?” With weak neck muscles, I craned my neck sideways and forward in search of eye contact with my gynecologist. His head and bow tie floated above the peak of my knee cap as cold stirrups rigidly cradled my feet.
I Have Complicated Feelings About Rare Disease Day
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…
On This and Every Other Day, I Am Proud to Be Rare
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 Can Be Wise Beyond Her Years
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…
When You Have SMA, Every Day Is Rare
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…
The Stories I Share Make Me Rare
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…
