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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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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

How Do You Communicate?

How Do You Communicate?

Cause I use a special communication device called a Dynavox & when I don't have my Dynavox I communicate through eye signals or little vocal murmurs. My Dynavox is almost like an IPAD & I access it by tapping a little switch & it scans through buttons until I select the button that I want.Here's a photo of me with my Dynavox 👇👇👇

Can I Go On Hospice With SMA

Can I Go On Hospice With SMA

I am 71 years old. I was diagnosed with SMA type 4 32 years ago. I have a colostomy, a feeding tube, and use a ventilator daily for non invasive ventilation. I am quite weak, can no longer walk and can only stand briefly with assistance, I am bed bound and have chronic pain. I feel I have little time left on this earth and my doctors agree. I have started hospice, but the hospice company says that SMA is not considered a terminal disease. They have, however, qualified me for hospice with my… read more

SMA Considered High Risk For Covid After Vaccination?

SMA Considered High Risk For Covid After Vaccination?

I have SMA type 3(permanent wheelchair user) and asthmatic , l have been working remotely since pandemic and now my work wants me to go back to the office - l am still anxious even though l am vaccinated. I spoke to my Healthcare provider thinking they could give me a letter for work to state l should continue teleworking since l am high risk. However my Healthcare provider said the opposite that SMA and Asthma is not high risk and only people with auto immune are classed as high risk.

I have… read more

A mySMAteam Member said:

Thank you LisaAnneBatista

posted 4 months ago

Can A 23 Year Old Take The At Home Drug For SMA?

Can A 23 Year Old Take The At Home Drug For SMA?

My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!

A mySMAteam Member said:

I am so sorry to hear you went through this! My son also had spinal fusion when he was 3, another reason he was so hesitant to try the Spinraza. We will look into the oral stuff more, was just… read more

posted 7 months ago

I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter

I'm Looking For Commode Chair Recommendations For My 10 Yr Old Type 2 Daughter

We previously had a r82 Flamingo, but are looking for something with more padding under the bum as the Flamingo is not comfortable enough. I'd like something that can roll over a toilet, but also be used with a pot. Thx! :)

Gene Therapy

Gene Therapy

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

A mySMAteam Member said:

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

posted about 1 year ago
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