Recently Diagnosed

Receiving a diagnosis of SMA often comes as a shock and can be very difficult for everyone involved. There’s a lot of information and it can be difficult to know where to begin. Sections in this website won’t all be relevant for you at this time, but may become more so in the future; they’re designed to be dipped into as and when needed. 

SMA is the name given to a number of genetically distinct conditions which all result in muscle weakness, but there’s great variation in the severity and impact they have. The more common forms of SMA are broadly known as 5q SMA, because of their genetic cause. 

Page last updated: July 2019