Eating and Diet

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 if you have any difficulties with eating and your diet, they’ll be referring to Chapter 5, Nutrition Growth and Bone Health of the Guide to the 2017 International Standards of care for SMA (SoC): www.smauk.org.uk/international-standards-of-care-for-sma This is for those with 5qSMA (Types 1, 2, 3 or 4)

They’ll be thinking not only about your ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also about what physical milestones you’ve reached. For simplicity, these milestones are sometimes used to group people with SMA as:

  • non-sitters - those who're unable to sit
  • sitters - those who're able to sit but not walk
  • walkers - those who're 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 what’s in Chapter 5,  but maybe makes it a bit more readable.

Page last updated: July 2019