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This topic has 4 replies, 3 voices, and was last updated 2 years, 5 months ago by Ryan Berhar.

  • Author
    • #15983
      DeAnn R

      Have you heard the saying, it takes a village?  This article reminded me of that.  I’ve certainly learned that getting Spinraza is a team effort.  My team isn’t quite as extensive as this article points out, but it’s certainly not a one department show.  Can you relate to this article? https://smanewstoday.com/2018/12/07/experienced-multidisciplinary-team-enables-success-spinraza-programs-study/?utm_content=buffer99870&utm_medium=organic+social&utm_source=facebook.com&utm_campaign=buffer

    • #15989
      Kevin Schaefer

      Absolutely DeAnn. I think about all of the people who are just there on my injection days: my Biogen case manager, my Mom, my neurologist, his assistants and a radiologist. Not to mention I have a ton of family and friends who support me every step of the way. Thanks for sharing.

    • #15990
      Ryan Berhar

      The larger my team got, the more dysfunctional everything became. It literally got to the point where my neurologist asked me to ask the Biogen reps to back off, as apparently they were overstepping their bounds. There were like 15 different entities, none of whom were communicating with each other. It was one huge mess.

      • #15992
        DeAnn R

        I can see where that could be an issue Ryan.  Too many cooks in the kitchen.  That’s kind of why I opted not to get a Biogen rep.  Several people do and find them helpful, but I was working well with the clinic, so figured why rock the boat.  I’m kind of a minimalist when it comes to doctoring, so in this last year I’ve seen more specialists than since I was a kid.

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