Meet the TikTok star who's using "dark humour" to raise awareness about neurological disorder ALS

Meet Amanda Tam. At first glance the TikTok star's channel looks like that of many influencers. She loves taking part in the trend of the moment, so she's given her views on the Roman Empire and also dancing to popular songs, and spoken out about fit checks.

But, take a more in-depth look at her profile, and you'll realise that Tam is using her influencer status to spread awareness a neurological disorder Amyotrophic Lateral Sclerosis (ALS), which she suffers from. ALS, also known as Lou Gehrig's disease, is a condition which harms nerve cells and muscle function with no known cure.

The Quebec-based TikToker began documenting her journey with ALS in November 2022, around a year after she was diagnosed with the illness in October 2021. Her videos have gained millions of views and likes since. It is a life-threatening illness, but Tam chooses to have a light-hearted approach to her informative videos and insists she will live life to the full.

She told Business Insider she loves "dark humor" and that it's important to find "the joy and hope in life." It's this attitude that means that her followers, which include others living with the terminal illness, view her as an inspiration.

Tam said she thought it would be important but also funny to share clips about her situation as a young Asian woman since, from her point of view, ALS often affects "60-year-old white men" because of how "rare and aggressive" it is. Tam's views are founded in medical evidence as the average age of diagnosis for ALS is 55 and the disease 20% more common in men than women., according to The ALS Association.

The organisation also reports that every 90 minutes someone is diagnosed with the disease, and someone also passes away from it. Celebrities and famous faces who have been diagnosed with ALS include theoretical physicist, cosmologist and author Stephen Hawking, “Sesame Street” creator Jon Stone, Boxing champion Ezzard Charles, "SpongeBob SquarePants" creator Stephen Hillenburg and Theatre producer Jenifer Estess.

'This disease doesn't get enough spotlight'

Tam said she wanted to do something to raise awareness of the condition after her own diagnosis made her realise it had fallen out of public consciousness since The Ice Bucket Challenge. This challenge was a 2014 viral sensation that raised awareness for ALS by filming people pouring ice cold water over themselves. The creator Peter Frates died from the disease five years later.

Tam said: "Ever since the Ice Bucket Challenge in 2014, this disease doesn't get enough spotlight and I wanted to show the world what it is like to live with it," she said. "I knew my generation wasn't educated on this topic and I wanted to show them what it is."

Tam is happy to take light-hearted approach to discussing her serious illness with her followers. For example, in one of her most recent videoes, she pulled funny faces at the camera and the text on-screen read, "me after telling people I have a disease with no cure and will only leave my brain and eyes functioning."

In another video, she showed herself dancing in a hospital with the caption "how my doctor thought I would react when she told me I'm dying but I still have to get a job and be an adult."

Her TikTok account, @AmandaTam00, has more than 18,000 followers, and her videos have received more than a million likes. Her biography also says that she's in her "terminally ill era."

Tam said: "I've always loved dark humor and I think by integrating that into my videos, people are more engaged and get to see who I really am. It's always been important for me to be able to distinguish myself from the disease. By adding my sense of humour, my audience can learn about the disease and get to see my personality."

Speaking about her own condition, Tam said she's "quite pleased" with the way her ALS has progressed. She said it's developing slowly, and it's mostly her "walking and fine motor skills that are heavily impacted."She added: "I could be in a much worse situation, but since I am progressing slower, I'm not too shabby."

Tam's account isn't all jokes, either. She's posted many videos answering viewers' questions about her condition. People have asked if she follows a diet plan, how she manages fatigue, and also how she spotted her first ALS symptom. The answer is that one of her fingers started bending and she lost grip strength.

She said that one of the main goals of her page is to offer an insight into the good and the bad about her journey, so in order to be honest she records videos - even when it's tough. "It's important to be a realist and be aware of your situation, but it's equally important to still find joy and hope in life. TikTok has been a coping mechanism and a form of expression for me," she said.