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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, 2 voices, and was last updated 8 months, 1 week ago by DeAnn R.

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    • #21620
      DeAnn R
      Keymaster

      In case you haven’t seen this article I thought I’d share it here. I’ve often wondered if there would be long term effects from repeated lumbar punctures. The article suggests that although it’s been well tolerated, some monitoring of CSF can be done. For me it’s not something I’m concerned about. What did you take away from the article?

    • #21622
      Alyssa Silva
      Keymaster

      I’m a little confused. Doesn’t our CSF get tested regularly already? After each injection, I always get lab results of my CSF. Does that not happen at all injection sites??

    • #21627
      DeAnn R
      Keymaster

      I’m pretty sure mine isn’t tested. Usually I see in the notes clear CSF was removed, but that’s the extent of it. I’m sure if it looked cloudy or suspicious they’d do more testing. Maybe depends on the facility?

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