A diagnosis of spinal muscular atrophy (SMA) can be overwhelming for parents and families. In Australia, SMA specialists, including neurologists, genetic counsellors and nurses, are available to provide information and support during this time.
To help support families and SMA specialists, the following Caring Conversations videos were created. Each video was made in collaboration with a family who has recent experience with SMA.
Their stories are shared here to help people better understand the lived experience of SMA. However, the videos are not intended to provide medical information about diagnosis, treatment nor patient-specific advice. People wanting to know about the management of SMA should consult their local SMA specialists.
Adriana and Adam from SMA diagnosis to now
Hear from Adriana and Adam on first learning about SMA following newborn screening and their journey from diagnosis to now.
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Carolyn and the changing SMA landscape
Listen to Carolyn tell her family’s experience with the changing landscape of SMA and the support they received along the way.
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John and living with SMA
Hear about John living with SMA now after receiving a prenatal diagnosis of SMA and early treatment at birth.
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