Do you use ventilators while sleeping? I apologize if my question bothers you
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
My heart goes out to you. I find it hard to imagine being in your situation. Are there care facilities available for you?
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
Yes
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.
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
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
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