SMA care guide for families launches online

Published Date
30/11/2020
Author
Bobby Ancil
Category
Care & Support

We are pleased to announce that the 2017 Spinal Muscular Atrophy (SMA) best practice care guide for families is now also available as an online resource designed to work across all devices. The guide is intended to provide people with SMA and their families information about what kind of medical treatment they may receive in an accessible format; suitable for people who do not have a medical background.

Using the information from the original 2007 SMA care recommendations and the updated clinical care recommendations published in the Neuromuscular Disorders journal, Muscular Dystrophy UK has worked with partner organisations led by TREAT-NMDto produce the first family friendly guide to the 2017 international standards of care for SMA.

The new online version of the guide will help to ensure that the latest medical care standards are available to all people living with SMA. The content is the same as in the printed version and downloadable version of the guide for families but we hope will be accessible to more people in this user-friendly format.

The Standards of Care were agreed on by a committee of international healthcare and patient experts. They describe what assessments and interventions families and adults should expect to find in any neuromuscular centre.

The guide includes information about:

  • Genetics and diagnosis
  • Physiotherapy and Rehabilitation
  • Orthopaedic Management
  • Nutrition, Growth and Bone Health
  • Breathing (Respiratory and Pulmonary Care)
  • Other Organs and Systems
  • Medication
  • Emergency Care
  • Anaesthetics
  • Administration of new treatments for SMA
  • Ethics and Choices

 

We hope that the guide will be another valuable resource to ensure that people living with SMA are able to access the best possible medical care.

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