Recently Diagnosed with SMA

You may have a baby or child or be an adult who has just had a diagnosis of SMA confirmed. Or you may have a newborn baby and had a test result to say SMA is suspected. Whatever the circumstances this news often comes as a shock. It can be hard for everyone involved. We hope these pages will provide you with information that will help you. Our Community Support Team is also here to support you and your family. Please, don’t hesitate to contact them.

Hearing Your Newborn Baby’s Blood Test shows ‘suspected SMA’

This is for parents or carers who have had a call from a specialist. They have told you that your baby’s blood test result shows suspected SMA. We go through the next important steps that will investigate this further.

Hearing Your Baby’s Diagnosis of Spinal Muscular Atrophy

This is for parents or carers whose baby (aged 0-12 months) has recently been diagnosed with SMA. It covers the emotional aspect of receiving the diagnosis and some suggestions of who can provide support.

A doctor holding a parent / carers' hands in support.

Hearing Your Child’s Diagnosis of Spinal Muscular Atrophy

This is for parents or carers whose child has recently been diagnosed with SMA. It covers the emotional aspect of receiving the diagnosis and some suggestions of who can provide support.

young boy in wheelchair at table - smiling & playing with toy zoo animals

Looking after your Child who has SMA Type 1

This guide covers more about the practical side of caring for your child.

Looking after your Child who has SMA Type 2

This guide covers more about the practical side of caring for your child.

Boy in wheelchair smiling sitting at school desk

Looking after your Child who has SMA Type 3

This guide covers more about the practical side of caring for your child.

partial view of two people with papers in discussion

Drug Treatments for 5q SMA

These pages answer questions about possible drug treatments and the Centres where they are provided.

Adult man who has SMA, standing with his partner by his car and home.

Adult Onset SMA – Diagnosis and Care

This guide is for adults who have had a recent diagnosis of an adult onset form of SMA.

Young boy with SMA in supportive seating with a tray, playing with toys.

Toys & Activities for Babies and Young Children

Our booklet for practical tips and suggestions for safe and practical play for different ages and stages.

Emergency Care for Children

This information sheet will assist clinical staff at A&E services in local hospitals with their assessment of the needs of a child with SMA.

SMA Care UK and the Standards of Care

The 3-year SMA Care UK Project has started its review of the 2017 International Standards of Care for SMA.

webinar title and photos and titles of presenters

Treatment & Care – Webinars with Experts

Health experts give the community up to date information and advice

UK SMA Patient Registry

This collects vital medical and quality of life information directly from individuals who have SMA.

Who’s Who of Professionals

This briefly describes the different professionals you might meet.