Being a rare caregiver can dominate your identity. It can help to remind ourselves we are that AND other roles too. #caregiver
"Far too often, the role of family caregiver overshadows the identity of those caring for their loved ones. As family caregivers juggle their many responsibilities, they may lose sight of who they are beyond their role as caregiver. As you focus all your attention on caring for your child with Joubert syndrome, the fact that you’re an architect who loves to do crossword puzzles sometimes gets pushed to the side—and #RareCaregiverAnd aims to change that. Through #RareCaregiverAnd, CAN wants to highlight the identities, activities, and interests that make up the lives of rare caregivers. A person’s sense of self is an essential component of self-care that can ultimately prevent caregiver burnout and depression.
“We believe that #RareCaregiverAnd will help caregivers of a loved one with a rare disease recognize that there is more to their life than their caregiving responsibilities,” said John Schall, CAN CEO.
Read more about this here.Use
#thankacaregiver #nationalcaregiversday and
#RareCaregiverAnd if you're posting on social.
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Daniel DeFabio
Global Genes
Director of community engagement
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