Young Woman with Rare Disease Finds Strength in Friendship
Meet Ms Siti Nur Sabrina Anis, a 26-year-old diagnosed with ALS, a rare and terminal neurodegenerative disorder. Despite facing muscle weakness and challenges, she leans on her best friend, Mr Luke Ligo, for support. Learn how she navigates her diagnosis and treatment journey with resilience and determination.
Ms Siti Nur Sabrina Anis had to switch from riding a motorcycle to using a motorised wheelchair in 2021 due to being diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 22. ALS is a rare, terminal neurodegenerative disorder affecting nerve cells in the brain and spinal cord.
Ms Sabrina faced muscle weakness and difficulty in movements, leading to a long journey to diagnosis. Eventually, she was diagnosed with ALS in November 2022. She carries a genetic variant in the SOD1 gene, making her case unique and requiring a combination of standard ALS treatment and specific therapy targeting the gene.
With the support of her best friend, Luke Ligo, and medical intervention, Ms Sabrina received a new gene therapy drug called Tofersen in July 2023. The drug has helped stabilize her condition, allowing her to live her life to the fullest and volunteer to raise awareness about ALS.
According to the source: The Straits Times.
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