The 27-year-old astrologer and content creator took to Instagram to share her C9ORF72 genetic mutation diagnosis
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NEED TO KNOW
- Maren Altman revealed she carries a genetic mutation linked to ALS and frontotemporal dementia, but is currently symptom-free
- She underwent genetic testing due to her family’s history of early-onset neurological diseases, including her mother’s diagnosis in her 40s
- Altman is exploring end-of-life planning and shared emotional reflections on inheriting the mutation from a family member
Astrologer and content creator Maren Altman is opening up about a life-changing diagnosis.
In a candid Instagram Reel, the 27-year-old Bitcoin expert revealed that she recently learned she carries the C9ORF72 genetic mutation, an inherited disease associated with forms of ALS and Frontotemporal dementia.
While she claims she is currently symptom-free, Altman explained that her family's history suggests she is at high risk of eventually developing one of the neurodegenerative diseases.
"I was recently confirmed to have inherited the fatal, incurable brain disease caused by the C9ORF72 mutation," Altman said in the video.
"I'm currently entirely presymptomatic, and I'm not going to have clinical symptoms for a while, but I am almost guaranteed to get frontotemporal dementia, ALS, or both in my 40s based on my family history."
Altman shared that her decision to undergo genetic testing was a result of witnessing several generations of her family develop neurological disease at relatively young ages.
"I got tested because my mom had FTD [Frontotemporal dementia] onset in her early 40s, which matched her mother's early Alzheimer's timeline," she continued.
She went on to explain that despite her healthy lifestyle and overall habits, an inherited mutation cannot be prevented.
"Being vegan and straight edge and really healthy for literally basically my whole life has no impact on this," Altman said.
"Lifestyle cannot change a massive cellular mutation that started in conception."
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According to the National Library of Medicine, a pathogenic C9ORF72 repeat expansion is the most common known inherited genetic cause of both ALS and frontotemporal dementia.
Altman also reflected on the emotional weight of knowing she could potentially pass the mutation on to another generation.
Not every person who carries the mutation will develop the disease, and the age of onset can vary, but family history is considered an important factor when estimating risk.
"I never wanted kids, but there is a gravity to knowing that it's an ethical necessity to be a biological dead end," she said.
The content creator was also candid in her decision to start exploring end-of-life planning, such as medical aid in dying (MAID), before symptoms begin, saying she would "rather have dignity" once the clinical disease starts.
"Being 27 and having to already think about these advanced directives is quite sad," she said.
She added that she hopes she develops ALS rather than frontotemporal dementia because of the cognitive decline.
"I would rather lose my body quickly than my mind slowly," Altman said.
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