Forum Replies Created

  • francesca-arcadu

    Member
    June 5, 2019 at 5:08 am in reply to: Frustrations with Spinraza Protocols

    Oh, finally I read other people saying what I think. ” Logistical nightmare for most of us” is the best definition about all the protocols and difficulties in Spinraza treatment. I live in Sardinia (Italy), and my city is 250km far from the hospital, and we dont’t have good roads. So for me it would be really a nightmare go to the hospital, stay in hotel for 2/3 nights every time and for every infusion. I really hope Roche treatment and gene therapy will be available for adults because we can’t endure other fatigue in our life, and our caregivers too…

  • francesca-arcadu

    Member
    September 29, 2018 at 1:44 am in reply to: Proper Diet Key to Managing SMA

    I take magnesium too. It helps me with pain and anxiety.

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