It’s National Feeding Tube Awareness Week, a great opportunity to educate, share experiences, and advocate for better understanding and support for people who require a feeding tube. Many people with Spinal Muscular Atrophy (SMA) experience difficulties with swallowing, digestion, and maintaining adequate nutrition and we want to highlight the essential role that feeding tubes play in ensuring individuals with SMA with receive the nutrition they need.

Whether you are a parent of a child with SMA, an adult navigating life with a feeding tube, or someone looking for more information and support, we have gathered key resources to help guide you.

Understanding Nutrition and Feeding Challenges in SMA

Nutrition is a crucial aspect of managing SMA. Muscle weakness can affect swallowing and digestion, meaning that some individuals may need assistance to maintain proper nutrition. SMA UK provides valuable resources on this topic:

Eating and Diet for Teenagers (13-17) with SMA – This guide explores common mealtime challenges, nutritional needs, and feeding tube options for teenagers living with SMA.

Health and Wellbeing for Children (0-12) with SMA – This resource provides essential information on supporting young children with SMA, including feeding difficulties, dietary considerations, and overall wellbeing.

Exploring the Blended Diet for Tube Feeding

For those who use a feeding tube, different options are available, including commercial formulas and blended diets. A blended diet involves using real, whole foods that are pureed and given through a feeding tube.

The BLENDS Project is a fantastic initiative that promotes the use of blended diets for people who are tube-fed. It provides insights into how this approach can be implemented and the potential benefits it offers for overall health.