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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.

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      • #20681
        Brianna Albers

        Happy Monday!

        In her latest column, Alyssa reflects on the impact of Spinraza. She’s grown used to the gains she’s seen, from improved lung function to an increase in stamina. However, her latest dose was delayed because of an insurance holdup. She noticed several changes in the weeks she was waiting for her dose, from fatigue to emotional exhaustion.

        The absence of Spinraza helped Alyssa realize just how much the medication was doing for her. The delay between doses can be frustrating, but the improvements she’s seen are well worth it. Alyssa is more determined than ever to fight against SMA through the use of Spinraza.

        If you’re currently taking Spinraza, what kind of changes have you noticed between doses?

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