Resources to live well with SMA

Neuromuscular clinics provide specialised care for neuromuscular
conditions, including SMA. Coordinated care through a
neurologist is recommended, and SMA clinics offer proactive care.


Being your own advocate

Being your own advocate
Being your own advocate
Being your own advocate

Posted by: Juanita

“Although I haven’t really had a healthcare team behind me in the past because I have been so disconnected, now I have a number of health professionals around me and we have a healthy, respectful relationship. They do have additional knowledge these days and I welcome that. I welcome all that now. In the past, it frightened me. I didn’t want to know about my future. But having that knowledge given to me now, I embrace it and together we can all move forward.

Also, I think with the NDIS now in play, we have that choice to connect and get a team behind us. I think everyone’s journey with SMA is different and I think it’s okay at times to feel alone and disconnected. Rather, it's what you do with that aloneness, and now the NDIS allows us to be part of society, unlike how it has been in the past.

The biggest difference is I now have the knowledge and now I am able to go to a health professional and give them what I know about SMA. We can have conversations where we can work together to find out what actually is occurring or what actually needs to be put in to place. I am no longer idle in that discussion because I have had a life of experience and education. I am able to advocate for my wants and my needs and my goals for my future with that education, and that’s so empowering.”

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