This topic contains 0 replies, has 1 voice, and was last updated by  DeAnn R 1 month ago.

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     DeAnn R 

    For myself, the decision to seek treatment with Spinraza was a no brainer.  Initially I was told it was just for kids and not to bother.  After doing my research and learning how the drug works it made my resolve to get treatment even stronger.  Of course there’s been obstacles such as finding a center for adults nearby, getting it covered considering the high cost of the drug(and that’s an understatement,) the administration method and even the frequency of treatments.  Even though I can’t walk, I climbed over every one of those hurdles.  I’m anticipating my 5th dose in March.  What was your biggest hurdle?  Are there hurdles that have prevented you from getting treatment?  Have you decided not to seek treatment for one reason or another?  If you’re a parent, what concerns do you have for your child regarding the treatment or hurdles they face?  As a community we’d love to hear your thoughts.

    • This topic was modified 1 month ago by  DeAnn R.

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