Rachel V Thomas

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Brooke Eby Dies At 37 After Chronicling Her ALS Journey For Four Years

TikTok star <span>Brooke Eby</span>, who chronicled her life with amyotrophic lateral sclerosis (<span>ALS</span>), through candid, humorous and deeply personal videos, has died at 37.

<span>Eby</span> was diagnosed with ALS, also known as Lou Gehrig’s disease, in 2022 at age 33. ALS is a progressive neurodegenerative disease that damages the nerve cells responsible for voluntary muscle movement.

Eby became known for sharing the realities of living with ALS on social media. Her videos combined humor with candid accounts of how the disease affected her mobility, breathing, speech and daily life.

The ALS Network described her as an “extraordinary advocate, storyteller, community builder and friend” whose honesty and humor helped change how people understood ALS.

“Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another,” said Sheri Strahl, president and CEO of the ALS Network.

Eby also used her platform to challenge the perception that ALS mainly affects older men.

“I didn’t choose ALS, but I did choose to get loud, and be irreverent about it,” Eby said after receiving an award from the ALS Network for her advocacy.

<strong>Also read: </strong><a href="https://www.healthandme.com/health-news/new-rna-therapy-for-als-the-disease-stephen-hawking-had-patient-with-rare-motor-neuron-disease-improves-article-156196277" data-type="tilCustomLink">New RNA Therapy For ALS, The Disease Stephen Hawking Had: Patient With Rare Motor Neuron Disease Improves</a>

<h2>She Documented Her ALS Progression</h2>

Eby regularly updated followers as her condition progressed.

In June 2025, she said her breathing capacity had declined significantly over six months. She also shared that she had undergone a procedure to have a feeding tube placed in her stomach.

By January 2026, Eby said she had begun experiencing bulbar symptoms, which can affect speech and swallowing. She reported trouble swallowing, speech disturbances and excess saliva.

In September 2026, she shared that her speech had deteriorated rapidly.

“In the last few weeks, people just can’t understand me at all,” she said, explaining that speaking had also begun requiring careful positioning of her body.

<h2>Eby Wanted People To Understand ALS Can Affect Anyone</h2>

In a PEOPLE essay, Eby wrote that she wanted people to understand that ALS does not discriminate by age, gender or demographic.

“I have ALS at a relatable age. Personally, I always associated this disease with older men,” she wrote. “But I could be someone’s daughter, sister, mom, girlfriend, wife.”

While much of her content was comedic, Eby also educated her audience about ALS, including how symptoms can vary and how the disease progresses.

Read More: <a href="https://www.healthandme.com/health-news/stanford-scientists-say-the-human-brain-may-be-two-separate-organs-how-it-could-affect-als-sma-research-article-156210454" data-type="tilCustomLink">Stanford Scientists Say The Human Brain May Be Two Separate Organs: How It Could Affect ALS &amp; SMA Research</a>

ALS affects motor neurons in the brain and spinal cord that control voluntary muscle movement. As these nerve cells degenerate, people can develop muscle weakness, loss of movement, difficulty speaking and swallowing, and eventually breathing problems.

ALS can begin in the limbs or with speech and swallowing problems, known as bulbar-onset ALS.

There is currently no cure for ALS, although treatments can help manage symptoms, improve quality of life and extend survival.

<ul><li>Muscle weakness</li><li>Muscle cramps and twitching</li><li>Muscle atrophy</li><li>Stiffness and spasticity</li><li>Difficulty speaking or swallowing</li><li>Breathing difficulties</li><li>Changes in emotional expression</li></ul>

Some people with ALS also develop cognitive or behavioral changes. 

Eby’s social media posts gave thousands of followers a candid look at how the disease could change everyday life, while helping raise awareness about a condition that is often associated with older adults.

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TikTok star Brooke Eby, who chronicled her life with amyotrophic lateral sclerosis (ALS), through candid, humorous and deeply personal videos, has died at 37.Eby was diagnosed with ALS, also known as Lou Gehrig’s disease, in 2022 at age 33. ALS is a progressive neurodegenerative disease that damages the nerve cells responsible for voluntary muscle movement.Brooke Eby Made ALS PersonalEby became known for sharing the realities of living with ALS on social media. Her videos combined humor with candid accounts of how the disease affected her mobility, breathing, speech and daily life.The ALS Network described her as an “extraordinary advocate, storyteller, community builder and friend” whose honesty and humor helped change how people understood ALS.“Brooke changed the way people see ALS, but she also changed the way people living with ALS find and support one another,” said Sheri Strahl, president and CEO of the ALS Network.Eby also used her platform to challenge the perception that ALS mainly affects older men.“I didn’t choose ALS, but I did choose to get loud, and be irreverent about it,” Eby said after receiving an award from the ALS Network for her advocacy.Also read: New RNA Therapy For ALS, The Disease Stephen Hawking Had: Patient With Rare Motor Neuron Disease ImprovesShe Documented Her ALS ProgressionEby regularly updated followers as her condition progressed.In June 2025, she said her breathing capacity had declined significantly over six months. She also shared that she had undergone a procedure to have a feeding tube placed in her stomach.By January 2026, Eby said she had begun experiencing bulbar symptoms, which can affect speech and swallowing. She reported trouble swallowing, speech disturbances and excess saliva.In September 2026, she shared that her speech had deteriorated rapidly.“In the last few weeks, people just can’t understand me at all,” she said, explaining that speaking had also begun requiring careful positioning of her body.Eby Wanted People To Understand ALS Can Affect AnyoneIn a PEOPLE essay, Eby wrote that she wanted people to understand that ALS does not discriminate by age, gender or demographic.“I have ALS at a relatable age. Personally, I always associated this disease with older men,” she wrote. “But I could be someone’s daughter, sister, mom, girlfriend, wife.”While much of her content was comedic, Eby also educated her audience about ALS, including how symptoms can vary and how the disease progresses.Read More: Stanford Scientists Say The Human Brain May Be Two Separate Organs: How It Could Affect ALS & SMA Research What Is ALS?ALS affects motor neurons in the brain and spinal cord that control voluntary muscle movement. As these nerve cells degenerate, people can develop muscle weakness, loss of movement, difficulty speaking and swallowing, and eventually breathing problems.ALS can begin in the limbs or with speech and swallowing problems, known as bulbar-onset ALS.There is currently no cure for ALS, although treatments can help manage symptoms, improve quality of life and extend survival.ALS SymptomsSymptoms vary but can include:Muscle weaknessMuscle cramps and twitchingMuscle atrophyStiffness and spasticityDifficulty speaking or swallowingBreathing difficultiesChanges in emotional expressionSome people with ALS also develop cognitive or behavioral changes. Eby’s social media posts gave thousands of followers a candid look at how the disease could change everyday life, while helping raise awareness about a condition that is often associated with older adults.

brooke eby dies at 37 after chronicling her als journey for four years

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