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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 2 replies, 3 voices, and was last updated 5 months ago by Kevin Schaefer.

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      • #19725
        DeAnn R
        Keymaster

        Recently I put up a poll on a Spinraza social media group I’m in. It asked individuals if they have a FAM or not. For those of you who don’t know that stands for Family Access Manager. Basically they’re a representative from Biogen to help make sure the process goes smoothly. When the doctor prescribes Spinraza you can fill out a Start Form and you’ll be assigned a FAM. Surprisingly after a posting for a day 115 people say they have a FAM while 4 (including myself) do not. I chose not to pursue a FAM as I prefer to have fewer cooks in the kitchen sort of speak. Recently however, I posted about my frustrations on changes my hospital is making to the process, you can read about it here. It’s making me wonder if I should seek a FAM, they may be a good support team member. Many who took my poll stated how beneficial they’ve been. Some seem indifferent. What have your experiences been?

      • #19726
        Rachel Markley
        Participant

        I love my FAM!!! My facility (where I happen to work) didn’t want to do complex spines at all and still isn’t thrilled with it as there’s only 2 of us. She immediately addresses any concerns I have – i.e. new dr taking too much CSF – at my facility. She also was great about giving me directions for how to schedule, where to go, and specific people to talk to in each department.

      • #19733
        Kevin Schaefer
        Keymaster

        Like Rachel, I’ve been fortunate to have an excellent FAM. She’s supportive, responsive, and she’s always there if I need anything. I understand your mentality, but I’d still give it a shot.

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