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    • #17930
      Katie Griffith

      As a mom of a son with FA, I feel like life is constantly changing. Just when it feels like things have finally settled down, progression happens and adaptations need to be made. Do you find it hard to deal with the constant changes that a degenerative disease brings? What helps you cope with these changes?

    • #17933
      Karina Jeronimides

      Knowing that the change will end is what helps me.  And working viciously to fight it with PT/doctors/new procedures or/and adaptations that will make up for my loss of independence.  But yes, change is the hardest part of this illness, and figuring out what to do to make up for it. I hope OMAV can give us all a break from it.  If it doesn’t we need to keep fighting. It’s why I feel like Sisyphus.   Who according to Albert Camus still managed to be happy.

      • #17935
        Katie Griffith

        Great suggestions! Having a community that understands is huge as well as hope and joy even in hard circumstances. Keep fighting!

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