Childhood onset 5q SMA affects each child differently and its impact varies greatly. When your child’s medical team is discussing and deciding with you what's the best care and management for your child, they think not only about your child’s ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also what physical milestones your child has reached. For simplicity, these milestones are sometimes used to group children 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
Impact Of SMA On Breathing
The muscle weakness caused by SMA can affect the muscles for breathing. Breathing problems may be common for children who are ‘non-sitters’ (usually diagnosed with SMA Type 1) and children who are ‘sitters’, but they're rare for children who are ‘walkers’.
Management and Care
There are different ways of helping to manage these breathing challenges. When your child’s medical team is discussing and deciding with you what might be needed for your child, their reference and yours will be Chapter 6 Breathing (Respiratory and Pulmonary Care) of the family-friendly Guide to the 2017 International Standards of Care for SMA
www.smauk.org.uk/international-standards-of-care-for-sma This is for those with 5qSMA (Types 1, 2, 3 or 4).
You may also find helpful information in whichever of the following SMA UK guides is the ‘best fit’ for your child:
- Looking after your child who has SMA Type 1 - or is a 'non-sitter'
- Looking after your child who has SMA Type 2 - or is a 'sitter'
- Looking after your child who has SMA Type 3 - or is a 'walker'
Last updated July 2019