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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 5 replies, 3 voices, and was last updated 2 months, 2 weeks ago by Alyssa Silva.

    • Author
      • #21261
        Kevin Schaefer

        Happy Friday everyone! Hope you all have had a great week.

        Check out my latest column here. I wrote about existing and emerging treatments for SMA, and how surreal it all is. At times I don’t even know what to think, especially because I never gave the future of SMA much thought when I was growing up. It’s a lot of mixed emotions for me personally.

        Do any of you ever feel this way? Do you have any thoughts about future treatments?

      • #21272
        Halsey Blocher

        I think this is something that we can all relate to. Growing up I assumed the cure for SMA wouldn’t be developed in my lifetime. I thought my efforts to help with research and fundraising would benefit future generations. I never imagined that I might actually get to experience those benefits for myself. It’s amazing to see how far the research has come, and leaves me believing that I actually might see the day that SMA is cured.

        • #21277
          Kevin Schaefer

          Totally agree. It’s like I was brought along to all of the MDA and SMA fundraisers when I was a kid, but I never thought about the research seriously benefitting people in our generation. Back when Zolgensma got FDA-approved, I wrote another column about what these advancements mean for us. Check it out here.

      • #21275
        Alyssa Silva

        I second everything Halsey said. Never in my life did I think there would be a treatment available for me. It’s absolutely incredible the strides that are being made in the SMA community— we are literally witnessing history being made.

        • #21279
          Kevin Schaefer

          It really is surreal. I’m curious too, since you started Spinraza before any of us, have you noticed any effects lately? What have your energy levels been like?

          • #21295
            Alyssa Silva

            I feel as though I may have plateaued? I’m not entirely sure. I have definitely felt gains in my respiratory function, ability to chew/swallow/smile, and even in my stamina since I started 3 years ago. But within the last year or so, I feel as though I’ve stayed the same. Which is still great— better than declining!! Still waiting on that muscle elixir though.

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