Please answer, I only use the bipap device when sleeping. Is it possible that I do not use gaseous breathing in the future?

Which is better for treating sma disease, is Evrysdi or Spinraza?

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.

Hiii! You see, I have sma 2 and my neck is a little weak, I have been looking for a comfortable headrest for a long time but I have not been able to find one. They are all too big or do not reach the back of my neck, especially because my backrest is too high and I have been told that it can not be lowered. At home I have no problems but to go out in the street or to travel by car I have to take one of those neck pillows that are used to sleep on airplanes. I would like to replace it with… read more

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

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

One day last week I asked my attendant as usual to clean my eye glasses before putting them on me. They were still really foggy...as an artist , I really rely on my vision, so he cleaned them again . Still foggy, tried glass cleaner, lens cleaner etc. After an argument in which I insisted that I was not in fact going blind, I went to the eye glass store and discovered that I need new glasses...the scratch guard wore off my glasses...now everything is foggy. I thought scratch guard was… read more