Fumbling Through the Dark: Navigating Adulthood with SMA
Happy Tuesday! I was recently approached by a company to discuss the resources that are currently available to SMA patients. It got me thinking about my relationship with the different resources that are out there. I only just got involved with the community a few years ago, largely because I didn’t feel like the resources were geared towards adolescents or adults.
I wasn’t supposed to live past nine years of age, so I’m pretty much just figuring out this whole adulthood thing as I go along. I don’t really feel like there’s a lot of support for adults with SMA, maybe because our cohort is just starting to reach adulthood. Children with SMA absolutely deserve support too, but I do wish there were more resources available for our generation, particularly regarding higher education, career issues, and family planning.
I wrote a column on the subject. Do you relate with anything I said? What kind of resources do you wish were available?