The Stories I Share Make Me Rare
Feb 24, 2020 09:00 am | Brianna Albers
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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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 would think that a 9-year-old who is confined to […]
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 […]
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 […]
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 […]
