Living with a degenerative disability is difficult, but it’s nothing compared to knowing there are life-changing treatments I can’t access because I’m too old, and they are too expensive.
I have Spinal Muscular Atrophy or SMA Type 1, a rare and severe genetic condition that affects around 1 in 10,000 people and is carried by 1 in 40.
SMA has four different forms and Type 1 is the second most severe, with most babies dying before they reach the age of two.
Read more at: https://www.abc.net.au/news/2021-12-09/why-risdiplam-should-accessible-for-people-with-sma/100668468
