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Recently Diagnosed with SMA

Recently Diagnosed with SMA

A diagnosis of SMA 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.

If your baby has been part of the Oxford-Thames Valley-Wessex SMA newborn screening study and been diagnosed with SMA, please talk to your baby’s clinical team about the diagnosis and what this means for you and your child. You can also discuss with them which pages on our website may still be useful for you.
Image shows parent / carer's hand holding a baby's hand.

Hearing Your Baby’s Diagnosis of Spinal Muscular Atrophy

This is for parents / 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.

Image shows a doctor holding a parent / carers' hands in support.

Hearing Your Child’s Diagnosis of Spinal Muscular Atrophy

This is for parents / 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.

Sidney

Looking after your Child who has SMA Type 1

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

Girl outside in powerchair

Looking after your Child who has SMA Type 2

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

Bobby Allen at school

Looking after your Child who has SMA Type 3

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

Committee

Drug Treatments for 5qSMA Types 1, 2 and 3

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

Image shows an adult man who has SMA, standing with his partner outside his house.

Adult Onset SMA – Diagnosis and Care

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

Image shows a young child with SMA Type 2 in a highchair 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.

Child with SMA Website card

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.

care nurse

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.

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YouTube Channel

Videos and webinars about treatment updates, care and lifestyle management and conversations with healthcare professionals

questions

Who’s Who of Professionals

This briefly describes the different professionals you might meet.