Nasal feeding tubes and spinal muscular atrophy | mySMAteam

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Top 9 Search Results for "Nasal feeding tubes"

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Can Adult Be Treated With Zolgensma?
A mySMAteam Member asked a question 💭
When Does A Patient With Spinal Muscular Atrophy Need A Laryngeal Breathing Tube?
A mySMAteam Member asked a question 💭
What's Up With You Gurlllll? How Are You Feeling Today?!
A mySMAteam Member asked a question 💭
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I Have Scoliosis And Nowadays Feeling Very Tired Can't Sit
A mySMAteam Member asked a question 💭
A mySMAteam Member

Do you use ventilators while sleeping? I apologize if my question bothers you

How To Spend A Day?
A mySMAteam Member asked a question 💭

Hi guys , I am 22 years old.I live in the countryside of Malaysia.I'm here today to ask a small question. but my english level quite bad, hope you all who read this post can take some patient to understand my voice.

Since I didn't have a university, I only finished my second year of high school.I have graduated for almost four years,but I never know how my future will happen .To be honest, I always thought I was an ordinary person, because I went to an ordinary high school, and I only realized… read more

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A mySMAteam Member

My heart goes out to you. I find it hard to imagine being in your situation. Are there care facilities available for you?

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
A mySMAteam Member asked a question 💭

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

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A mySMAteam Member

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

Has Anyone Had Any Sudden Jumps In Weakness?
A mySMAteam Member asked a question 💭
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A mySMAteam Member

Yes

How Handle Dealing With Someone Dating Who Is Getting Very Serious...are Not Sure If Able Because Of Disability?
A mySMAteam Member asked a question 💭

Am having very conflicted feelings as I know I may never meet someone again who was interested in me in this way...but am not really sure can physically, emotionally and financially fullfill this person's visions for a future. I don't want to break up as care for this person...but don't think i could really fullfill her wishes.

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A mySMAteam Member

I've struggled with this my whole life and continue to do so...I subconsciously sabotage every close relationship for fear of not being able to provide what that person deserves. I never thought it… read more

Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?
A mySMAteam Member asked a question 💭

This body shaming problem is for everyone i guess, not for people with sma only. But anyway I wanted to ask as a girl struggling with that feeling time to time

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A mySMAteam Member

Well Personally I don't much like wearing anything that Clings to My Body, because then My Crooked Body really shows. So I tend to buy what I like, but I may buy just a tad bit larger just so it's not… read more