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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 10 replies, 5 voices, and was last updated 9 months, 2 weeks ago by Adnan Hafizovic.

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      Posts
      • #17351
        Kevin Schaefer
        Keymaster

        Recently, I had a conversation with a Mom who has two sons with SMA. Her boys are middle-schoolers, and they’re both skeptical about starting Spinraza. They worry about potential side effects of the injection, and whether or not the medicine will make a difference with them.

        Both of these are valid concerns, and it’s pretty common for older kids and adults to have anxieties about starting the treatment. I also had these same concerns and anxieties before my first injection, and I wasn’t sure whether or not I wanted to go through with it. If your child is older, understand that starting Spinraza isn’t an easy decision for them to make. There are a lot of factors for them to consider.

        If you find yourself in this situation as a parent, and you really want your child to start the treatment, consider these steps.

        First, empathize with your child. Don’t just ignore their concerns, but instead try to understand where they’re coming from. It is a big decision for them, and they need you to hear their concerns and anxieties. Talking through these matters is important.

        Second, talk with them about why you think Spinraza will benefit them. Tell them what you’ve heard from other people with SMA and parents in the SMA community. This is also when you can encourage them to talk with someone else with SMA who has been receiving Spinraza for a while. I was able to talk with this mother’s kids, and they seemed encouraged by my positive experiences with the treatment. For me, it always helps to talk about this stuff with other SMA people. I know that they “get it.”

        Third, let it be your kid’s decision. I know this part is tough, but if your kid is older, they have to be the one to make the decision to pursue the treatment. If you follow the above steps, there’s a good chance that they will go through with it. Still, it’s their call to make.

        This advice is just based on my own opinions and experiences, but I hope it helps. Feel free to ask me anytime about my experiences with Spinraza.

      • #17364
        Ryan Berhar
        Participant

        Good points

      • #17366
        Halsey Blocher
        Participant

        Very good advice. I can certainly relate to their concerns. Due to complications related to my spinal fusion, I have opted out off Spinraza until a new delivery method is developed, but I always encourage for people who don’t have these complications. That said, everyone needs to way the pros and cons for themselves, and their decision should be respected whatever they choose.

        • #17384
          Kevin Schaefer
          Keymaster

          I agree Halsey. It’s not a decision to be taken lightly, and I had those same concerns as well. I had my fusion in 2005. Fortunately, my health care team has been able to do cervical injections for me (shots in my neck), and it’s worked out great for me. I know this isn’t an option for everyone, but I’m happy to answer any questions regarding this delivery method.

          • #17390
            Halsey Blocher
            Participant

            I haven’t heard of many people having it delivered that way. My doctors weren’t comfortable going to high on my spine, and I know it can be more dangerous the higher it is placed. I’m holding out for an IV delivery method.

          • #17399
            Kevin Schaefer
            Keymaster

            It’s not a common delivery method. I’m fortunate to be at Duke, where the doctors were willing to try it, and it’s worked well for me. But yeah, I understand waiting for something else to come along.

      • #17388
        Michael Morale
        Keymaster

        Kevin, I thought the advice that you gave in your article was spot on. If this mother is a member of this forum, maybe we can get other parents who have gone through this with their kids to give her their advice and suggestions.

        Great job on the article.

        • #17389
          Kevin Schaefer
          Keymaster

          Thanks Michael. I haven’t heard from this woman since I met her. I met her and her boys last week when I went for PT. We were just talking in the hallway, but I gave her my email and told her what I do for BioNews.

      • #17438
        Adnan Hafizovic
        Participant

        Whoever has the chance to use Spinraza should use it and risk it. I probably will never have such an opportunity as many in the world.

        • #17443
          Kevin Schaefer
          Keymaster

          You never know. Hopefully it will get approved in more countries in the coming years.

      • #17465
        Adnan Hafizovic
        Participant

        Of course I hope, hope last die.In most countries, approval isn’t problem, but a high price of Spinraza.

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