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.

Personal stories

Meeting others with SMA


Posted by: Michaela

“I am the only biological child of my Mum and Dad, my Mum has other children who don’t have the condition. For the entirety of my life I was Michaela and my wheelchair was merely an accessory and not a determinant of how I was to be treated, because I was treated just as anybody else. I never quite realised until I became older that I have a disability and that many would meet me and say things like ‘I didn’t like disabled people until I met you!’.

For almost 24 years I have resisted anything to do with SMA as I was terrified I might be told or even see something that would scare me, because I knew there was nothing I could do to limit my deterioration. I was recently pleasantly surprised to meet some other ladies with SMA, and shocked that they had the same attitude to life as me and were so genuinely down to earth. Even down to seeing a moment of surprise when I asked what type of SMA they all have, as this is usually something we all hold close to our hearts.”

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