A 23-year-old woman's heart-rending journey after being diagnosed with a rare terminal illness has captured the interest of people around the world.
Amanda Tam, who lives in Montreal, Canada, was diagnosed with the rare and terminal illness amyotrophic lateral sclerosis (ALS) in October 2021, just five days before her 21st birthday. Tam, who graduated from McGill University in the city in 2023 with a degree in psychology and marketing, began noticing symptoms in January 2021. She is now using social media, where she is known as @amandatam00, to raise awareness and share her story with the world. Moved followers are rallying behind Tam to support her in her mission to speak up about the cruel disease and enjoy what time she has left.
"Although I have a terminal illness, I am dedicated to living my best life while bringing awareness to such a rare, yet deadly, disease," Tam told Newsweek via email. "I am a realist, and I think, because of that mentality, I could stomach my diagnosis easier than the people around me.
Tam added: "I knew going into my appointment that my neurologist would diagnose me with ALS, and, because of that, I wasn't in any shock or denial. It would be a
mistake to go into such an appointment optimistic as I knew there was something wrong."
ALS, also commonly known as Lou Gehrig's disease, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, leading to loss of muscle control. This rare neurological disorder, affecting approximately 30,000 people in the U.S., and can run in families, but most cases have no family connection to the disease.
After grappling with symptoms for seven months, Tam decided to seek medical advice in July 2021. While the journey to a formal diagnosis can take a long time for many who suffer from suspected ALS, Tam said that her diagnosis process was incredibly fast.
"Some people wait for years to be seen by a doctor, but my general practitioner immediately knew something was wrong," Tam said. "The very next day, I had an appointment with a neurologist."
After multiple scans and tests, including MRI scans of her brain and cervical spine, an EMG, and a lumbar puncture, Tam was diagnosed with sporadic ALS. While the diagnostic process was rapid compared to many who wait years for a diagnosis, the news was life-altering.
Making an Impact Online
Tam soon turned to social media as a platform to raise awareness and cope with her condition. As an extreme outlier, with the average person being diagnosed with the disease male and in their 60s, Tam wants to share that ALS does not discriminate. She is currently the youngest person ever to be in the ALS QUEBEC database. Her breakout video, posted to the account @amandatam00 TikTok on November 24, 2022, humorously addressed her situation and quickly amassed more than 3.2 million views.
"The video was something I came up with while getting my intravenous medication at the hospital," Tam said. "The caption on the screen is '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,' as I danced to 'My Happy Song'."
She now frequently goes viral for her humorous and sarcastic posts about living with ALS, bringing attention to the disease and inspiring others through her candid approach. Her playful and dark humor has resonated with many, and her TikTok account, which frequently plays on trending memes and Gen Z discourse, has become a space where she connects with others impacted by the rare condition.
"I enjoy this kind of humor a lot and realized others do, too," Tam said. "It's important to see a dark situation in a lighter view." She added: "I've learned to live symbiotically with it."
Her openness has not only brought laughter to those affected by ALS who need it, but also created a supportive community. The graduate has proved that, even in the face of terminal illness, there is room for joy, connection, and making a difference.
"Many people have reached out to me through social media," Tam said, "whether it's because they're going through a similar situation or have a loved one affected by it.
"I love that this platform has given me a community where I can meet people in ways I would've never been able to."
Tam's decision to use TikTok, a platform used by more than 1 million monthly active users, as a vehicle for advocacy stems from her desire to reach a broader, younger audience.
"People my age don't necessarily watch the news anymore, and I know they spend a lot of time on TikTok," Tam said. "If I made engaging-enough videos, I would be able to garner viewers."
"I couldn't be more thankful for what the app has done for me and the awareness of ALS."
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