Trusted Resources: Education

Scientific literature and patient education texts

SMA Type 2 – Looking After Your Child Who Has Had a Recent Diagnosis

key information

source: Spinal Muscular Atrophy UK

year: 2022

summary/abstract:

One of the first questions many families ask their medical teams is, what treatment might be possible for my child? Since late 2016, the gradual worldwide introduction of drug treatments for children, young people and adults who have SMA Type 2 has seen positive outcomes for many. In the UK, the NHS funds the two currently possible treatments. Your child’s medical team will talk you through what is known about each one, the benefits and any risks and with you decide on the one that is the best option for your child.

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

·         Neuromuscular conditions

·         Hospital or community paediatrics

·         Physiotherapy

·         Occupational therapy

·         Breathing (respiratory) care

·         Orthopedics

·         Dietetics

·         Speech and language therapy

·         General practice, community health care

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