breathing remains stable for infants with sma type 1 taking spinraza study shows and spinal muscular atrophy | mySMAteam

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Top 10 Search Results for "breathing remains stable for infants with sma type 1 taking spinraza study shows"

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

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

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

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

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

Treatment Kab Aayega Sma Type 3 Ka
A mySMAteam Member asked a question đź’­
Gene Therapy
A mySMAteam Member asked a question đź’­

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

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

As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?
A mySMAteam Member asked a question đź’­

I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more

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A mySMAteam Member

Totally understand how that goes with unreliable care attendants, one's that you really don't want to be alone with or need to be either, or one's that actually really show up early or on time every… 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 đź’­
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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.

Is Ridisplam Effective For SMA-LED1 Disease?
A mySMAteam Member asked a question đź’­
What Is SMA-LED? Read Article...
What Gene Causes SMA?
A mySMAteam Member asked a question đź’­
Are There Any Moms Who Had Been Diagnosed Before They Had Children?
A mySMAteam Member asked a question đź’­
A mySMAteam Member

I have SMA3
I’m 36 and was diagnosed at age 5. I just had my first baby almost 5 months ago. It’s tough. So worth it but I’m struggling during the day with him due to lack of strength and covid… read more