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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 1 reply, 2 voices, and was last updated 2 months, 2 weeks ago by Lupa F.

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      • #20650
        DeAnn R
        Keymaster

        One question on my mind is why children and adults receive the same dose of Spinraza.  Apparently I’m not alone.  Here’s an article that details a new study testing Spinraza at a higher dose. One question I have is if the higher dose would come with a higher price-tag. Of course we’ll have to wait and see! What are your thoughts on this news?

        • This topic was modified 2 months, 2 weeks ago by DeAnn R.
        • This topic was modified 2 months, 2 weeks ago by DeAnn R.
      • #20661
        Lupa F
        Participant

        The main nerves that get affected by SMA are there from birth so that’s one reason it possibly works well no matter what size you are. I wouldn’t mind trying a higher dose though to see if that feeling that it’s sort of wearing off as the next dose is coming up might go away even if it doesn’t do anything better the rest of the time.

        But I really hope it’s not a scheme to jack up the price to try to make up any revenue lost to Zolgensma since actually making the drug is such a tiny part of its cost. The cost was always said to be based on its impact to the healthcare system and little to do with manufacturing or administering it.

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