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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 6 replies, 4 voices, and was last updated 5 months ago by Halsey Blocher.

    • Author
      Posts
      • #19643
        Kevin Schaefer
        Keymaster

        Hey everyone, hope you’re all having a great week.

        I wanted to share Halsey’s latest column here. This is a pretty heavy one, as she details her struggle to acquire any treatment. This is an important perspective to share, as I know other adults who haven’t been able to receive Spinraza.

        Can anyone here relate to this piece? Do you have any thoughts or questions?

      • #19668
        Ryan Berhar
        Participant

        My experience was very similar. The difference was that I knew ahead of time that my spine was inaccessible. I was prepared to do the hole drilling surgery Halsey described, but that’s where things went awry for me. I was unable to go through with it due to an insufficient nutrition plan.

        • #19670
          Halsey Blocher
          Participant

          I heard a lot of people talk about needing to do this surgery because of the spinal fusion, but it wasn’t something that I was ever told I might need to do. I wasn’t at all prepared for what I was told.

      • #19669
        DeAnn R
        Keymaster

        This article actually brings up a lot of questions for me. Did they just do an x-ray or did they do a CT scan? A CT scan can show much better detail. Were all the options discussed? I get mine through the neural foramen. It’s an approach from your side where they access the spine through the natural opening created where your nerves branch out into your legs. Mine is done with CT guidance. There’s also the option of getting a port placed, or getting cervical injections. Of course each method has its own risks, and it’s totally a personal decision, but I hope all options were explored.

        • #19671
          Halsey Blocher
          Participant

          It wasn’t your typical x-ray machine. It was actually very similar to a CT scan. I had a CT scan done for a different doctor and we sent the images to them as well, but no one looked at them until that morning. We did discuss the approach you use, but they didn’t feel they could safely do it that way either. Despite my spinal fusion, my back has started to curve again, getting in the way. I’ve heard of people having port put in, but I want to take the least invasive approach possible. The risks of something more extensive are just not worth it to me. I’m hoping that the IV delivery that is used for Zolgensma will be approved for adults.

          • #19724
            DeAnn R
            Keymaster

            At first I didn’t think I’d be able to get it either because of my “bulletproof” fusion, but I’m fortunate they can do it this way as like you I’m not sure I’d do a surgery. Keep your ears open for Risdiplam as well. It’s a daily oral medication that works similarly to Spinraza I’ve heard. Not positive where they are on trials with that one. Fingers crossed approval within the next year? My speculation is that if they do ever expand the label for Zolgensma it would need to be IT delivery for adults, but who knows.

          • #19746
            Halsey Blocher
            Participant

            I’ve heard of Ridiplam! I’ve been trying to keep up with it but I’m also not sure what phase the trials are in. It kind of blows my mind that it might be possible to treat SMA with something as seemingly simple as an oral medication.

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