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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 3 voices, and was last updated 1 year ago by Rachel Markley.

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    • #19984
      DeAnn R
      Keymaster

      If you’ve been following my Spinraza journey you’ll know a couple things. As with many SMAers my blood is difficult to find (unless you’re a mosquito) and I’ve had transportation problems. Luckily neither of these were issues for dose 9.

      Having same day labs made me nervous, but she found my blood with one poke! Surprise, surprise the virgin isn’t pregnant. Because my injection is done with CT guidance they want confirmation I’m not “with child.” Although that’s not the only thing they check, that’s why I decided to do same day labs. Otherwise I’d have to get blood drawn twice.

      My less than reliable transportation company got the boot. Trying something new is always scary, but in this case it was so worth it. Better maintained vehicles and a great driver. What a relief.

      Although the procedure isn’t totally pain free, it’s probably as close to it as I can imagine. Got the brief zing to my toe as the needle got close, but that’s about it. The procedure itself takes 20-30 minutes, followed by an hour of laying flat afterwards (probably the most difficult part.)

      A 10 hour day for a 20 minute procedure hardly seems worth is sometimes. But then on the two hour ride home my left hand was twitching and having spasms for a bit. I could just tell it was like my muscles responding to getting messages again after the last dose wearing off. Everyone’s experience is unique, so this isn’t to say this will happen to you. For me it was confirmation that yes, it’s worth it.

    • #19988
      Kevin Schaefer
      Keymaster

      Glad it went well!

      I definitely know what you mean about wondering if it’s worth it sometimes. You said it well though. Despite the hassle and time commitment, the benefits of this treatment make it well worth it.

    • #20010
      Rachel Markley
      Participant

      Your virgin pregnancy comment made me laugh as I say essentially the same thing for every blog post I write after an injection! The crazy long days are the worst part for me and are made worse because of the fact that I work at the hospital where I’m dosed. I’m requesting for my first maintenance dose that I be allowed to get my IV early and go back later for the procedure.

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