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    • #18148

      November is National Family Caregivers Month. It is a time to recognize the compassion and dedication of caregivers who are supporting a family member or friend living with a rare disease, such as FA.

      The National Alliance for Caregiving’s website provides resources for caregivers: https://www.caregiving.org/

      Who is your primary caregiver?

    • #18155
      Karina Jeronimides
      Participant

      myself! got left by husband, father, mother who is taking care of my younger brother whose FA is worse. i know i am not the only one. there are so many brave souls who fight to make it on their own.   it’s scary being all alone.  but it pushes you to be stronger .  i was having trouble transferring to bed [fell a lot], 6-9 month ago, and i’ve done so much extra physical therapy that transfers feel more stable. i work with an accommodation and i know i’ll get fired one of these days because i am just not producing what i used to. But i am taking one day at a time for now.  And thank goodness my brother has my mother.

       

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