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Top 10 Search Results for "spinal muscular atrophy type 1"

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When Does A Patient With Spinal Muscular Atrophy Need A Laryngeal Breathing Tube?
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How Common Is Respiratory Acidosis Among Those Who Have Spinal Muscular Atrophy?
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A mySMAteam Member

So...i know respiratory difficulties of all sorts are common with SMA. I can't speak specifically about respiratory acidosis.

Anyone With Type 1 Sma Child Who Got Zolgensma?
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Yes, at 8 months old. His legs started moving in 2 days. He can now swallow, stand independently, walk short distances, and started riding a bike with training wheels. My general answer is to reply… read more

Is There Any One With Type 1 And Get Zolgensma.
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Can Anyone Give Greater Clarification Of Difference Between Smafk And Type 4 As Seem Interchangeable
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What Is Finkel Type SMA? Read Article...
Treatment Kab Aayega Sma Type 3 Ka
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Does Anyone On Here Use A Robotic Walker? In Specific We Are Looking At Getting The Trexo.
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A mySMAteam Member

I have seen amazing results for kiddos with Neuro muscular diseases using the Trexo!

What Exactly Is SMA? I Am 61. HAD AN L-5/S-1 Fusion When I Was 43..Right Now AmI Might Need To Get The Rest Of My Lubar Spine Fused.
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SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
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Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more

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A mySMAteam Member

Thank you so much for shared your story! I’m confused as to what I’m hearing about the Spinraza treatment...Isn’t that treatment extremely hard to get because of price? I don’t mean to pry but how did… read more

Gene Therapy
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I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?

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A mySMAteam Member

I believe every child is different. The child that I know of that received zolgensma is also receiving another treatment (Risdiplam) as well. She was a type 1 who is now able to lift her leg over her… read more