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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.
229 questions

What Are Your Top Tips For Dealing With SMA In The Heat?

A mySMAteam Member asked a question 💭
A mySMAteam Member

Very old picture ...but I made my prior two wheelchairs into a convertible with roll up sun shade roof. Contemplating building 3d printed air conditioner for current chair. It also had a built in… read more

posted 5 days ago

What Are The Best Diet For 1 Year Old SMAType1? Could You Please Give Me Ideas. Thank You. I'm From Philippines. ☺️

A mySMAteam Member asked a question 💭

Hey Everybody! How Often Do Y’all Go To PT? And What Are Your PT Routines Like?

A mySMAteam Member asked a question 💭

How I Feel Very Sleepy Hard To Stand Half Time

A mySMAteam Member asked a question 💭

Are You Frustrated With Finding Effective Treatments For SMA?

A mySMAteam Member asked a question 💭
A mySMAteam Member

Genetech can help you with everysdi/risdiplam. All 3 mfrs have abundant resources and are eager to help you

posted July 4

Where Can I Find Emergency Funding For Repairs For Disability Modifications?

A mySMAteam Member asked a question 💭

After a powerful storm last week, I discovered that both of the automatic doors on our house got damaged possibly from a power surge. The automatic doors are absolutely critical to my safety ...but last time called for service ...it was an $800 bill to repair one door. I need two doors installed by two separate companies repaired and can't afford what is likely a $2,000 bill. My coordinator for my disability program is already indicating that my disability program might not cover the cost of the… read more

A mySMAteam Member

Look for 504c charities that help with medical assistant, the pan foundation for example, another is mygooddays.org.

posted June 23

Does Anyone Take Something Stronger Than Extra Strength Tylenol For Pain When You Cannot Take Ensaids And What Is It?

A mySMAteam Member asked a question 💭

Is There A Resource On Here To Share Experiences We Have With Different Products And Companies Who Sell Those Items?

A mySMAteam Member asked a question 💭

Specifically a company who has, what I believe to be, terrible customer service, misleading company information and demanding sales of their accessories and goods exclusively or void their warranty?

How Can A Person Living With SMA Reduce The Recurrence Of Bronchial Infections E.g. Bronchitis, Pneumonia?

A mySMAteam Member asked a question 💭

I have SMA and constantly suffer from bronchial infections due to post nasal drip and would really like to be able to manage it .

A mySMAteam Member

Bipap at night with settings you can handle and that will help you sleep through the night. Good suction, coughalator and vest treatments morning and night(this is all what we do for my son) and I… read more

posted July 4

What's A Common Misconception About SMA?

A mySMAteam Member asked a question 💭
A mySMAteam Member

Still seeking the specific diagnosis in Nyc.
Best, Lynn
My symptoms are an exact match even to the "bear hug" pain, at times

posted July 18
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