People living with SMA and caregivers, have become aware of the importance of disease stabilisation and its relation to maintaining quality of life.1,3–5
According to a study published in 2012, people living with SMA will continue to experience disease progression, if they continue to lack suitable care and intervention.1
It has become clear to both people living with SMA and their caregivers that it is important to stabilise and maintain motor function for as long as possible, to help support the independence of adults with SMA.1,3,4
HERE IS WHAT PEOPLE LIVING WITH SMA
AND THEIR CAREGIVERS THINK…1
The perspectives and experiences of people living with SMA are important to the development of new care options. In a recent survey of people living with type II/III SMA and their caregivers it was shown that:1
*Survey was limited to European respondents only.
Improvement or stabilisation, including coughing and swallowing
Getting up, balancing, walking, jumping, running, climbing stairs
Stabilisation or improvement
Watch the interviews with Samuel (patient) and Michel (caregiver)
to learn more about about how to be part of the SMA community
The characters shown are real patients and the required consent to use their stories has been obtained from the patients and families. Photographs are for illustrative purposes only.