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This topic has 1 reply, 2 voices, and was last updated 2 years, 4 months ago by Ryan Berhar.

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    • #16456
      DeAnn R
      Keymaster

      Here is a link to an excellent article regarding why individuals are hesitant to start Spinraza.  Mainly the concerns are lack of information & data, access barriers and the prospect of future treatments.  All valid concerns in my opinion.  A decision to seek treatment is a very personal one.  For me it was an easy decision.  For others the decision is much more difficult.  What are your thoughts?

      Patient Perspectives on Spinraza Illuminate Need for Informed Decision-making on Treatment Options

    • #16476
      Ryan Berhar
      Keymaster

      I’ve chronicled my Spinraza journey on my column. Basically, after pursuing it for like two years, I finally just couldn’t take it anymore. There were so many setbacks. I just couldn’t put myself through any more. It’s been a few months since I made that decision, and I have no regrets so far. I’m optimistic about future treatment options.

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