Amanda Tam hopes to raise awareness about ALS while getting a few laughs through her content

NEED TO KNOW

• Amanda Tam uses social media and dark humor to raise awareness about juvenile ALS and her personal journey
• Diagnosed just before her 21st birthday, Tam shares realistic content to educate others about the rare disease
• She hopes her videos help people understand ALS and its impact beyond common misconceptions about age and demographics

Seven months after Amanda Tam was diagnosed with juvenile amyotrophic lateral sclerosis (ALS), she decided to share the news online.

“I made my first public announcement, my terminal illness reveal, on May 12, 2022,” Tam tells PEOPLE. “And so that was me just saying on Instagram, I made a post saying, ‘Oh, I’m terminally ill, and I want to bring awareness.’ ”

In November 2022, she posted another video, this time using her go-to dark humor, which seemed to resonate even more with viewers.

“That was the video that really, I guess, got the ball moving,” Tam, 25, says. “So after that, I was like, ‘Well, I guess people love it.’ So I mean, I just went with it, and now I still do it.”

@amandatam00

thank you angela #terminallyill #terminalillness #terminaltok #disabledtiktok #alsawareness #als #lougehrig #hospitallife #hospitaltreatment #medicaltreatment

♬ original sound – 🍒

“I personally think it’s really fun just being funny and people reciprocating it, and at the same time bringing awareness to the disease,” she shares. “The usual demographic is old white men. So I think it’s funny that I have it just because I’m the complete opposite of that.”

While Tam was diagnosed with juvenile ALS just days before her 21st birthday, the average age of diagnosis for ALS is 55, and the usual life expectancy from the time symptoms begin is two to five years.

However, Tam says that people who are diagnosed with ALS before the age of 25 “normally progress slower” and can live with the progressive neurodegenerative disease for several years or up to a decade.

“I’m about to hit my five-year mark this October, which is, I guess, exciting,” she shares, noting that she can still walk with a walker, eat on her own and more.

Although she interviews and applies for jobs, it would be hard for her to go into an office or commute, so she stopped working in May 2025. Now, her main focus is on social media and raising awareness about ALS.

Tam loves being “able to insert my life and my circumstances” into different social media trends, often catching people off guard yet reaching new audiences at the same time. She also balances it out with day-in-the-life videos, which she says are “the most informative in letting people know what a day in the life of a terminally ill person looks like.”

“Especially my hospital videos, those get a lot of views just because people want to know what happens,” she explains. “It’s a more medical background of it. But definitely the trends, silly videos are my favorite to do just because they’re so fun and they’re so non-serious.”

While she knows her “dark humor” is “not everyone’s cup of tea,” it has always been one of her coping mechanisms. She recalls one time going to visit a late relative at the cemetery, but her family was running late.

“I was like, ‘There really is no rush because they’re not going anywhere. They’re still going to be there if we’re late or on time or early,’ ” she recalls. “So stuff like that. I mean, I think it’s good, personally, to have a sense of humor about something so dark. It just lightens the mood, but obviously not everyone is into dark humor.”

“Sometimes it makes people uncomfortable, but that’s just who I am,” she continues. “I feel like with dark humor, I’m able to captivate people’s attention on social media, especially in the era of doom scrolling and people just scroll. And if I want to get their attention, I feel like it’s the best way to do it.”

Creating content also allows her to “document” the progression of her disease. While days, weeks and months can easily blur together, the videos provide timestamps for her condition. However, she also hopes her “authentic” and realistic content shows her “life as it is.”

“Especially when you bring awareness, you don’t want to, I guess, romanticize it,” she emphasizes.

@amandatam00

not what they thought i was gonna say #als #alsawareness #terminaltiktok #alsdisease #disabledtok #lougehrigdisease #terminallyillbutstillfighting

♬ original sound – ethan poisson

Tam has a “very realistic” outlook on what’s to come, and when she’s gone, she hopes people can look back at her content and “have a good understanding of the disease.”

“That’s really my main goal of all of this is just to have people know what ALS is because it’s not a very common disease, I guess,” she tells PEOPLE. “I like to say in the most non-menacing way possible, but anyone can get this disease. So obviously the general demographic is old white men, but there are so many communities where there are young people, young women, no matter what your age, race or gender is.”

“I want people to be able to look it up and see videos … of what ALS is besides what they might imagine it to be,” she adds.

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