Spine, Hips & Bones

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
  • walkers – those who are able to walk 

Impact Of SMA On The Spine, Hips & Bones

SMA commonly causes bone and muscle (orthopaedic) problems. It can weaken muscles that support the spine and, without this support, the spine can be pulled by gravity and curve. Most commonly this is a sideways ‘c’ or ‘s’ shaped curve called a scoliosis.

It’s estimated that as they grow, 60 – 90% of ‘non-sitters’ and sitters’ develop a curvature as do 50% of ‘walkers’. 

It’s also common for non-sitters and sitters to have unstable hips which may affect one hip or both and to be at higher risk of bone fractures. 

Management and Care

There are different ways of helping to manage these 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 4 Orthopaedic Management 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)

If your child has been recently diagnosed, you may also wish to look at whichever of the following guides is the ‘best fit’ for your child: 

Page last updated: July 2019