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Brooke Eby Shares What It's Really Like Living With ALS

Brooke Eby Shares What It's Really Like Living With ALS

Brooke Eby tells Advocate Now how she uses humor to navigate life with amyotrophic lateral sclerosis.

Brooke Eby tells Advocate Now how she uses humor to navigate life with amyotrophic lateral sclerosis.

Brooke Eby is navigating life with ALS with both humor and heart.


Amyotrophic lateral sclerosis, also known as motor neurone disease or Lou Gehrig's disease, is a neurodegenerative disease that causes the progressive loss of voluntary muscle control. Eby was diagnosed last March at the age of 33, after four years of seeking answers. She's since taken to social media to share her story and spread awareness.

Brooke Eby on What It's Really Like Living With ALS

While the initial diagnosis was a "shock," Eby says that after processing it, she thought "maybe it's not so bad that it has a name to it, because the last four years I had been living with just this one in-a-million thing that I couldn't relate to anyone or connect to anyone about."

Eby says she also struggled with her confidence after receiving the diagnosis, as she was worried how people would view her, especially those who had known her previously. It was her friends and family's quick acceptance that helped her learn to approach the situation with humor, and that she can share her experiences "on a larger scale while still making it fun."

"I think people are nervous to talk about heavy diagnoses or a death sentence, but I figure if I'm able to make it just a little bit light-hearted or add some humor into it, then we can get the conversation going and people won't be as uncomfortable," Eby explains.

Eby applies her light-hearted approach to her TikTok account, which has since amassed nearly 100k followers. Through sharing her journey online, she says she's since developed a more positive outlook on life. While the life-expectancy for someone with ALS is two to five years after diagnosis, Eby notes that too has led her to see "there's a lot of good out there."

"I'm always seeing good where I wasn't before," she explains. "People are willing to help. You just might not see it if you don't have to ask for help all the time, which now I have to. It's made me happier in the weirdest way because I now just focus on the things I care about: my family, my friends, the people I care about, the things I like doing."

For more interviews like these, watch Advocate Now on The Advocate Channel.

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Ryan Adamczeski

Digital Director

Ryan is the Digital Director of The Advocate Channel, and a graduate of New York University Tisch's Department of Dramatic Writing, with a focus in television writing and comedy. She is also a member of GALECA, the LGBTQ+ society of entertainment critics.

Ryan is the Digital Director of The Advocate Channel, and a graduate of New York University Tisch's Department of Dramatic Writing, with a focus in television writing and comedy. She is also a member of GALECA, the LGBTQ+ society of entertainment critics.