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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.

Featured Q&A

Sir If Any Updates Regarding The Complete Cure Of SMA Please Kindly Mail To My Account. "Service To Man Is Service To God"

By A mySMAteam Member

Hi SMA Family, Have You Heard About The Higher Dosage Of Spinraza? I Believe The Higher Dosage Is Only For Adults. It Went From 12mg To 26mg

By A mySMAteam Member 4 answers

Is There A Particular Diet And/or Food That Has Slowed Progression? E.g. The Keto Diet Has Been Used For Other Types Of Neuro Diseases.

By A mySMAteam Member

Is SMA The Cause Of My Tiredness? It Is Hard Work Doing Anything And Walking. It Would Make Sense That That Is The Reason For My Tiredness.

By A mySMAteam Member 6 answers
261 questions

How I Feel Very Sleepy Hard To Stand Half Time

A mySMAteam Member asked a question 💭
WallaWalla,WA

Are You Frustrated With Finding Effective Treatments For SMA?

A mySMAteam Member asked a question 💭
San Francisco, CA
A mySMAteam Member

Yes I am spinarza liquid I really can’t tell the difference I been on it 2 yrs now

October 7

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

A mySMAteam Member asked a question 💭
Finksburg, MD

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.

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 💭
Lansing, MI

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 💭
Durban, ZA

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

July 4

What's A Common Misconception About SMA?

A mySMAteam Member asked a question 💭
San Francisco, CA
A mySMAteam Member

For me, I think it’s all about getting understanding the love ones you have… like me married hardest thing for me is to keep trying to make her happy

October 7

For Anyone That Uses A Power Wheelchair That Can Still Stand Up What Chair Do You Use Thats The Easiest To Stand From?

A mySMAteam Member asked a question 💭
East Berlin, PA
A mySMAteam Member

Scooter, the tiller is useful in so many ways

September 23

Hi, I Have Sma Type 3, From Few Days I Have Some Involuntar Facial And Finger Twitching, It Is Normal ? I Was Kinda Stressed Too

A mySMAteam Member asked a question 💭
Brasov
A mySMAteam Member

Since I’ve been on evrysi , I do not have twitches anymore. But everyone’s different so the choice is try them both with using a notepad to document when you do twitch

May 25

What Tips Would You Share To Help With Seasonal Allergies?

A mySMAteam Member asked a question 💭
San Francisco, CA
A mySMAteam Member

I cannot take allergy medicine because I have ADPKD, type II, renal failure stage 4. I have to be very careful about any additional medications that I take. I also have year round allergies, my… read more

June 18
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