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SMA

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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.
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Are There Any Moms Who Had Been Diagnosed Before They Had Children?

Are There Any Moms Who Had Been Diagnosed Before They Had Children?

A mySMAteam Member said:

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

posted 9 months ago

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

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

A mySMAteam Member said:

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

posted about 1 year ago

For Those Adults With SMA, How Old Are You And Which Type?

For Those Adults With SMA, How Old Are You And Which Type?

A mySMAteam Member said:

I have type 4. I am 71 and was diagnosed about 32 years ago. (around 39 years old.

posted about 2 months ago

Surgery For Scoliosis

Surgery For Scoliosis

Im not a child,my doctor said in about 8years I will probably have to have surgery but it involves 3levels And it would be a major surgery so wants to hold off for awhile. Can you tell me why maybe

A mySMAteam Member said:

What kind of surgery?

posted over 1 year ago
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