What’s possible for me?
The best way to find out is to talk to your medical team and parents about any possible options for you so that you can make any decisions together.
The two treatments potentially available for young people are nusinersen (Spinraza™) and risdiplam (Evrysdi™). You may find it helpful to look at the information we have about how they work and how they’re given to you. The pages also have the latest updates on who might be able to have them. There’s also information about other drugs in the pipeline that you may find interesting. You can find all this if you browse through this section here.
What experiences have others had?
You might wonder what other people have chosen and what made them make that decision; what was having that treatment like; what difference did it make?
There are many people posting on Facebook, Instagram blogs and vlogs about their experiences. All of this can be very useful and interesting, but you’ll be very aware that what happens with one person’s SMA isn’t the same as for the next person. It’s probably also fair to say that if your experience hasn’t been a good one you might not be posting about it. So, whatever you do see – talk to your medical team and parents about it and ask all the questions you want. It has to be the right decision for you.
Page last reviewed / updated: August 2021
Next review due: August 2022