SMA News Today Columns

• When You Have SMA, Every Day Is Rare
• The Stories I Share Make Me Rare
• Living at Home as a Young Adult with SMA

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 of disease communities is vast, but the word “rare” unites us all.  In the world of SMA, every day is rare.  I […]

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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 … me. I could write about surgery. Birthdays in the hospital. Pneumonia […]

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Living at Home as a Young Adult with SMA

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 runs through people’s minds when […]

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