What’s possible for me?
If you’re already enrolled with a Specialist Neuromuscular Centre, the best option is to make an appointment for an assessment and talk through options with your medical team. If you’re not being seen at one of these Centres, you will need to ask your GP to make a referral. You can find lists of where the Centres are and the nearest one to you, here – please scroll down for Adult Centres.
Information about possible treatments - how they work, how they are given to you, who might be able to have them and why, can all be found on this page. This includes information about drugs still in the pipeline.
The two treatments potentially for adults are nusinersen (Spinraza™) and risdiplam (Evrysdi™) but do check the latest updates on those pages about access in the UK.
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. There are also some groups specifically focusing on, for example, experiences of risdiplam. All of this can be very useful and interesting, but you’ll be very well aware that what happens with one person’s SMA isn’t the same as for the next person, so what you may expect for you is still best discussed with your medical team and joint decision-making with them.
Page last reviewed / updated: July 2021
Next review due: July 2022