Planning Your Regular Care & Any Emergency Care

As you probably already know, SMA affects each person differently and its impact varies greatly. When your medical team is discussing and deciding with you and your parents the best care and management for you, they’ll be referring to the Guide to the 2017 International Standards of Care for SMA (SoC): www.smauk.org.uk/international-standards-of-care-for-sma They’ll be thinking not only about your ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also about which physical milestones you’ve reached. For simplicity, these milestones are sometimes used to group people with SMA as:

  • non-sitters - those who are unable to sit
  • sitters - those who are able to sit but not walk
  • walkers - those who are able to walk 

They’re not the most user-friendly terms, but we’ve included them as this is what they use in the SoC.

This section tells you in particular what’s in the SoC Chapter 9 Emergency Care, but maybe makes it a bit more readable.

Page last updated: July 2019