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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.

Top 5 Search Results for "Noninvasive breathing support"

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Excessive Phlegm/Mucous

Excessive Phlegm/Mucous

This has always been something I've had to deal with having SMA but within the last several years and the past few months, it has become much worse. Especially after eating or drinking and while trying to sleep. Often at night, I will wake up to choking and congestion from this.

I understand that this comes with the territory but could this be fatal? Can I end up drowning so to speak? If so, is it likely or probably not that likely to happen? I am 43 years old with SMA 2.

A mySMAteam Member said:

I’m sorry 😞 I know these types of changes can be stressful
I sleep with an aVAC most nights but even then I deal with some congestion
If Im concerned about mucus or build up in my sleep I will make… read more

posted about 20 hours ago

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:

My son’s Dr has told us that he is HIGHLY COMPROMISED & he has type 3.

posted 4 months ago

How Do I Edit My Story?

How Do I Edit My Story?

A mySMAteam Member said:

Great question!

1. First, select the menu icon in the upper right corner of the site, then under My Profile, select 'my story.'
2. Once you've done that, you'll be on the 'my story' page. You can… read more

posted 4 months ago

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?

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?

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

A mySMAteam Member said:

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

posted 3 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 almost 2 years ago