SACHA PFEIFFER, HOST:
After Brooke Eby was diagnosed with ALS, she started to document her experience.
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BROOKE EBY: Let's get ready while I tell you how I got a death sentence before my 30th birthday.
PFEIFFER: That's a clip from Eby's TikTok account, which had hundreds of thousands of followers. Now four years after her official diagnosis, Eby has died.
JUANA SUMMERS, HOST:
The influencer was perhaps best known for her humor. She once described levity as her superpower. In her videos, Eby talked about everything - from dating with ALS to taste-testing medicine.
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EBY: The pharmacist spent 10 minutes telling me how bad this tastes. So I mixed - ready? Oh, my God. At what cost?
SUMMERS: She also answered people's questions - about ALS, her daily life, even advice she would have given to her past self.
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EBY: No. 1, eat whatever you want. It literally does not matter. No. 2, you don't need to finish books you don't like. No. 3, invent the internet.
PFEIFFER: In January, the disease had progressed, and she was experiencing what doctors call bulbar symptoms.
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EBY: It's like trouble swallowing, speech disturbances, extra...
PFEIFFER: Still, Brooke Eby found humor in her situation.
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EBY: By the way, whoever created the word bulbar to describe speech disturbances when it's such a hard word to say - why are you so mean? It's like how you put an S in lisp. Webster's, who do I blame for that?
PFEIFFER: Eby wanted her posts to help people even after her death. In an essay published by People Magazine, she wrote, my TikTok presence will live on after I die, so I hope it serves as a visual diary for anyone who gets diagnosed and needs a guide.
SUMMERS: Brooke Eby died this week. She was 37 years old.
(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.
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