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Sandra Jean-Pierre | Digital Artist & Writer of Words.

Tag: SMA3

Disabled Chronicles, No.2

I was hoping this update would have been as easy and neat as one of my many #DisabledChronicles posts: a dramatic retelling of my true life events leading to an ultimate revelation. Succinct. Deep. Raw. Instead, in the days since my procedure, I’ve found myself near tears, touched by the outpouring of magick woo, prayers and love from those whom I share community with, who love and support me. I’ve been moved by the protection and care from those who

Body Conditions: SMA3

I don’t write about my main condition often.  In fact, I barely mention it’s name in real life (Kugelburg-Welander Syndrome, Spinal Muscular Atrophy (SMA), Type 3 or just SMA3).  Besides the naming of it not doing much to manage or change it’s effects on me, no one knows WHAT all its name implies or what its effects on me are.  So this usually has me launching into a super simple explanation of how this syndrome is my muscles’ inability to

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