spinraza alone may be better than combining it with zolgensma to treat sma type 1 and spinal muscular atrophy | mySMAteam

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Top 10 Search Results for "spinraza alone may be better than combining it with zolgensma to treat sma type 1"

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Gene Therapy
A mySMAteam Member asked a question 💭

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

Anyone With Type 1 Sma Child Who Got Zolgensma?
A mySMAteam Member asked a question 💭
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A mySMAteam Member

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

Which Is Better For Treating Sma Disease, Is Evrysdi Or Spinraza?
A mySMAteam Member asked a question 💭

Which is better for treating sma disease, is Evrysdi or Spinraza?

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SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
A mySMAteam Member asked a question 💭

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

Is There Any One With Type 1 And Get Zolgensma.
A mySMAteam Member asked a question 💭
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Can Adult Be Treated With Zolgensma?
A mySMAteam Member asked a question 💭
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Zolgensma For Adults
A mySMAteam Member asked a question 💭

There was an article last November saying Zolgensma could be helpful for adults. Will they be doing a clinical trial on that soon? I have not seen anything further on it.

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A mySMAteam Member

Wow, this is the first I've read of this. Can anybody confirm?

Treatment Kab Aayega Sma Type 3 Ka
A mySMAteam Member asked a question 💭
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Scoliosis
A mySMAteam Member asked a question 💭

Does scoliosis cause death

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A mySMAteam Member

So...I don't want to paint an overly rosy picture. The healing after my surgery took months. It wasn't a pleasant experience, the healing was very painful and I had complications that led to a… read more

I Have SMA Type 3 And Have A Torn Rotator Cuff. I Am Wondering If Anyone Has Dealt With This Specific Injury While Also Having SMA?
A mySMAteam Member asked a question 💭
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A mySMAteam Member

Working at it in PT now. Getting some relief 🙌🏻. I was just curious if anyone had some quick fixes 🤣. Unfortunately I think this will just be a long term thing I’m dealing with.