Eating & Diet

When your medical team is discussing best care and management with you for any eating or dietary difficulties you may have, they’ll be thinking not just about what your clinical classification was when you were diagnosed (such as SMA Type 1, 2, 3 or 4), but importantly which physical milestones are relevant for you now. For simplicity, they 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 they’re used in the International Standards of Care for SMA (SoC) for those with 5qSMA (Types 1, 2, 3 or 4), which is the reference point for all medical professionals.  

Difficulties with eating and diet are more common for people who are non-sitters or sitters but not so common for walkers. They don’t happen to everyone – as always with SMA, everyone's different.

Why People May Have Difficulties With Eating & Diet 

You may be very familiar with why some people have difficulties and what these can be, but if not, this recap may be helpful. 

SMA can cause weakness in swallowing muscles and affect how easily food moves through the digestive system. Eating difficulties can either mean someone doesn’t get enough food and becomes underweight or, because their muscle weakness makes it difficult to exercise, they can become overweight. Extra weight can increase the stress on muscles, bones and joints, making physical activity and breathing even more difficult. 

Due to weak muscles caused by their SMA, some people have problems with reflux (which can feel like an uncomfortable burning sensation in the chest or throat); some people can be sick after eating; some people can have difficulty with constipation. This can lead to feeling uncomfortable and a fullness in the stomach that reduces the movement of the diaphragm (the dome-shaped muscle that’s below the lungs and is important for breathing in) which in turn can make it more difficult to breathe and cough. Some people may also have problems with their ability to break down foods to produce energy (their metabolism). They may have high or low blood sugar and / or problems with breaking down fat.  

If you’re a sitter or non-sitter you may have difficulty swallowing safely. If you do, this can feel frightening and may mean you’re at risk of ‘breathing in’ food or drink (aspiration) which can make you choke and possibly cause a chest infection. 

Care and Management

Any support you need would be given to you following an assessment, but if you’ve just started to experience difficulties - or if things change for you - talk to your GP or a member of your healthcare team as you may need your care and management reviewed. You can read more about what this might be in Chapter 5 Nutrition, Growth and Bone Health of
A Guide to the 2017 International Standards of Care for SMA

Page last updated: July 2019