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Recently Diagnosed With SMA

Receiving a diagnosis of SMA often comes as a shock and can be very difficult for everyone involved.

We hope you will find a guide here that will help as a starting place for information and suggestions. They draw on the International Standards of Care for SMA (2017) and the experiences of families and adults affected by the condition. 

Looking After Your Child Who Has SMA Type 1

Looking After Your Child Who Has SMA Type 1

This guide includes: safe and comfortable positions for your child; how to support their breathing, feeding and movement; at home and out and about; support and other resources.

Nusinersen for Children with SMA Type 1: Information for Families

Nusinersen for Children with SMA Type 1: Information for Families

This treatment is currently only potentially available to children with SMA Type 1. This guide aims to help parents decide if they want to ask their medical team to assess their child for this treatment and, if so, how it can accessed.

Looking After Your Child Who Has SMA Type 2

Looking After Your Child Who Has SMA Type 2

This guide includes: supporting your child's posture, movement and mobility; breathing and eating; transport; support and other resources.

Toys, Play & Activities for Babies and Young Children who have Spinal Muscular Atrophy

Toys, Play & Activities for Babies and Young Children who have Spinal Muscular Atrophy

In here, you can read practical tips and suggestions for safe and supportive play for different ages and stages, including ideas shared by parents of children who have SMA.

Looking After Your Child Who Has SMA Type 3

Looking After Your Child Who Has SMA Type 3

This guide includes: supporting your child's exercise and mobility; breathing and health eating; support and resources.

Looking After Yourself If You Have Adult Onset SMA

Looking After Yourself If You Have Adult Onset SMA

This guide includes: getting a diagnosis; posture, movement and exercise; diet and breathing; fatigue and pain; support and resources.

Who's Who of Professionals

Who's Who of Professionals

Over time, you are likely to have contact with a number of different health, education and social care professionals. This lists many of them and the team you might meet, with a brief description of what they do.

Glossary

Glossary

SMA is a complex medical condition. You may come across new words and terms. This may be a helpful mini 'dictionary' for when you are unsure of what they mean.