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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.

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:

My daughter is 18, she is receiving maintenance doses of Spinraza and she has told me that she's feeling stronger

posted about 1 year ago
A mySMAteam Member said:

Hi. Im 47 years old type 3 and Im on around #15th injection. It has helped me a lot but I noticed a bigger difference when combined with PT/OT. I noticed better balance, less fatique, and I have gained some strength.

posted about 1 year ago
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 you gain access to such a wonderful opportunity? I’m sorry for the indecent nature of my question but I think we are all probably wondering🤷🏼‍♀️ Lots of lovely vibes heading you way truly💕

posted 8 months ago
A mySMAteam Member said:

I am 35 yrs old type 3. I was diagnosed at 18 months old. My parents noticed my wobble when I walked and that I had difficulty with stairs. I participated in dance class until I could no longer keep up with the other students. I was about 7 yrs old when I realized my body couldn’t do what others could. My greatest accomplishments include moving away from home, obtaining my Masters Degree, and raising a wonderful boy with my husband. I am on my 10th dose of Spinraza and believe it to be the reason I am still walking.(Along with God).

posted 10 months ago
A mySMAteam Member said:

I am 24 and I am currently not receiving treatment, but I do plan on going on Risdiplam. I have type 1 and I was diagnosed at 6 months of age. When I was 9 months old my mom decided to have me trached and g-tubed. This is all I've ever known, so my parents never really had to explain anything to me and my siblings never had any trouble with it either.

posted 12 months ago
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