FAQ Regarding SMA Progression

One common FAQ regarding SMA progression is: what does “progressive” mean? In Spinal Muscular Atrophy, progression means that motor neurons in the spinal cord and brainstem can weaken or atrophy, which affects the muscles used for movement, posture, breathing, swallowing, and daily independence. SMA is muscle weakness and atrophy caused by progressive degeneration and irreversible loss of lower motor neurons, while low survival motor neuron protein leads to motor neuron loss and weakness in skeletal muscles.

Another frequent question is: does SMA progress the same way for everyone? The answer is no. SMA progression can vary depending on SMA type, age of symptom onset, SMN2 copy number, treatment history, respiratory health, mobility level, and overall care. SMA types have historically been described by the age symptoms begin and the highest physical milestone reached, such as sitting, standing, or walking. This means one person may experience major symptoms in infancy, while another may develop weakness later in childhood or adulthood. Some individuals may lose strength more quickly, while others may have a slower progression that affects walking, arm strength, fatigue, posture, breathing, or independence over many years.

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Victor's Life with SMA: 

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My book, Become the Victor: Turning Trials into Triumph, tells my personal journey and offers guidance for anyone who feels stuck, discouraged, or unsure how to move forward. It is a reminder that “your greatest tests will become your greatest testimony.” It is available online at Barnes & Noble, Amazon, iTunes, and Google Play Books. 

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