Recently Diagnosed

Receiving a diagnosis of SMA often comes as a shock and can be very difficult for everyone involved. At the same time, for some people it can also be a relief to know there’s a name and a reason for the symptoms and difficulties they may have been experiencing for a while.

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, and include three types of childhood onset SMA - Types 1, 2 and 3 - plus the Adult Onset SMA Type 4.  

SMA Type 3 can be divided into Type 3a (if symptoms started before the age of 3 years) and SMA Type 3b (if symptoms started after the age of 3 years, but before the age of 18 years).

If you’ve been diagnosed with 5q SMA as a teenager, then it’s most likely that you’ll have a diagnosis of SMA Type 3b, though people may just call it Type 3.

There are also rarer forms of SMA, such as Distal SMA, which have a different genetic cause.

Which Information On This Website Is Relevant For You?

Whatever form of SMA you’ve been diagnosed with, there’ll be information and resources in most of the teenage sections of this Living With SMA website which will be relevant for you and, we hope, may provide some useful information and ideas for day-to-day living. If you're at all unsure if something's relevant for you, we suggest you discuss it with a healthcare or other professional who's supporting you, such as a physiotherapist, occupational therapist (OT), education or social worker.

The section that’s slightly different is Health & Wellbeing:

If you have SMA Type 3:

In the Health & Wellbeing section of this website, we talk about the 2017 Standards of Care (SoC) for SMA which covers 5q SMA. So if you’ve been diagnosed with SMA Type 3, this will be relevant for you – but as everyone’s different, it’s important to discuss with your medical team, which specific sections apply for you. 

If you have a rarer form of SMA e.g. Distal SMA:

If you’ve been diagnosed with a rarer form of SMA, like Distal, the guidance in these SoC may not be relevant for you. Frustratingly, there’s very limited information about rarer forms of SMA and it’s important to discuss your individual care and management with your medical team.

Page last updated: July 2019