Trusted Resources: Education

Scientific literature and patient education texts

SMA Type 1 – Looking After Your Child Who Has Had a Recent Diagnosis

key information

source: Spinal Muscular Atrophy UK

year: 2022

summary/abstract:

The aim of everyone involved in your child’s care is that your child will stay healthy and enjoy a good quality of life. Different members of the team will meet you regularly both to measure any change in your child’s health and to offer advice and interventions at the right time. As well as looking at your child’s medical needs, when they talk with you about options for care of your child, they will also want to be aware of your family’s social, cultural and spiritual needs. You should be given time to ask questions at every appointment with your child’s medical team and then jointly, with the team, decide what support is best for your child.

Your child should receive care and support from a multidisciplinary healthcare team. This can feel like an overwhelming number of people but they all have an important role to play. You may have contact with specialists in:

·         Neuromuscular conditions

·         Hospital or community pediatrics

·         Breathing (respiratory) care

·         Physiotherapy

·         Occupational therapy

·         Dietetics

·         Speech and language therapy

·         Palliative care

·         General practice and community health care

 

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