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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I'm wondering if anyone has been told what to expect as the disease progresses. All the information I can find only says "it will get worse" - "muscles will continue to weaken," "you will become wheelchair-dependent," etc., but doesn't give any info beyond this. Does it lead to total incapacity, like not being able to move a muscle? What does "end-stage" SMA (if there is such a thing) look like?

July 30, 2025
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A mySMAteam Member

I also wonder this myself

August 7, 2025
A mySMAteam Member

I would love to know

May 4
A mySMAteam Member

Studies show that the weakness plateaus at a certain point. Hopefully with new treatments maintaining strength will be easier.

September 25, 2025

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Greenville, SC