This topic contains 5 replies, has 3 voices, and was last updated by  Pooja Arora 5 hours, 13 minutes ago.

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    Posts
  • #11210
     Kevin Schaefer 
    Keymaster

    Hello all. I wanted to address other SMA adults who are receiving Spinraza. I know there are a lot of articles and discussions out there about kids who receive this treatment, but I’d like to hear from other adults.

    I’m 24 and started my Spinraza treatments in November 2017. Thus I’ve completed my loading doses, and my fifth dose is scheduled for May. Since starting I haven’t noticed any major changes in my physical strength, but I have experienced a general boost in energy. This is pretty significant for me, and I’d love to hear stories from other users here. Also feel free to ask questions here if you’re still trying to acquire the treatment.

  • #11213
     Pooja Arora 
    Participant

    I am SMA Type 3 or Type 4 sufferer.

    I am looking for treatments. presently I  do all my chores myself.

    • #11224
       Kevin Schaefer 
      Keymaster

      Thanks for joining the discussion Pooja!

      Yes, just to echo what DeAnn said above, Spinraza is a great treatment which I started receiving toward the end of 2017. I’m also happy to answer any questions you have about it. Welcome to this page.

    • #11254
       Pooja Arora 
      Participant

      Kevin, what improvement you feel.

      I mean if you could tell in details that what actions/ movements which you were facing difficulties earlier and is improved after Spinraza treatment.

  • #11214
     DeAnn R 
    Keymaster

    Great to hear from you Pooja Arora!  Currently Spinraza is the only FDA approved treatment for SMA.  Although other treatments are in trials they have not yet been FDA approved.  Spinraza has been approved for all ages and types (with rare exclusions) of SMA, however access really depends on what country you live and what insurance you have.  Some are putting age and type restrictions on who can receive treatment.  From my experience in adults improvements with Spinraza are a bit slower coming than what children are seeing.  However, since SMA is progressive, slowing or stopping progression is a big deal.  That’s what Spinraza is aiming to do.  If you have further questions please ask!

  • #11253
     Pooja Arora 
    Participant

    Hi I am from India, and adult with Type 3 SMA.

    Please let me know if I can also go for Spinraza clinical trial.

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