Questions & Answers

What are the most dangerous things a sma patient can face

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

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

I am interested to find out what everyone does regarding having their fingernails clipped. I struggle with this because I need help doing them, and it's hard for someone to do them. I often end up with cuts on my fingers, and I do not like getting them cut. I always have long fingernails because of this, LOL. Any good best practices that anyone has come up with? I can't stand this. Did I mention that?!

For those of you that are single...What do you do to get sexual relief? I know it's a bit of a personal question, but as I get weaker and lose the use of my hands, I'm struggling to get this taken care

Hi, I wonder how girls go to the toilet in places where there is no hoist and there is only one carer. I (or at least my carers) find it difficult to take of pants, because I cant lift myself.

My doctor believes I have SMA Type 3. Recently, I have discovered I have tremors. I think I've always had them, but didn't pay attention to them, blowing them off due to being hungry. However, I've also noticed that I have them when I'm not hungry. I don't always have them and they are not violent, but are annoying at times. 😆
Is this one of the many symptoms of SMA Type 3?

i.e Spinraza, Evrysdi, Zolgensma