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    • #24673

      Many of you know that the parent company of Pulmonary Fibrosis News is called BioNews Services. This amazing online health, science and research publication company employs many rare disease patients and caregivers. I am always in awe of the content produced by my talented colleagues here at BioNews, especially their vulnerability and courage when it comes to writing about their personal experience with a rare disease or as a caregiver to someone living with one.


      I wanted to share a piece with you by my talented co-columnist, Christie Patient. She is a caregiver for her Mom who has received a double lung transplant. This column moved me deeply, as she writes to herself as a new caregiver from the perspective of an experienced one. The lessons she learnt while caring for her Mom are both inspiring and full of love for others. If you’re a caregiver, I’d encourage you to read, Dear Christie: A Letter to a New Caregiver. I’d even hazard a guess that you’d be inspired by this piece not only as a caregiver, but a patient as well.


      For our incredible caregivers on this site: what is one lesson or piece of advice you’ve learnt through this experience, that you’d share with a new caregiver? 

    • #25357
      Nancy O

        There are quite a few, but I’d say staying in the moment important.  Learn what you can from the past but don’t dwell over what could’ve or should’ve been done differently.  Prepare for the future as best you can but try not to get caught up in negative thoughts about how it *might* be.

      • #25471


        Hi Nancy,

        Thank you so much for writing and contributing to this important topic – our caregivers are the foundation of our ability to cope and live with this disease! I love your comment: staying in the moment is so important and reflecting only on the past as an opportunity to learn and do things differently. Focus on ‘here and now’ is so important, and I think everyone should do this – quality over quantity – regardless of whether or not you have a chronic illness, but so few do. Take good care and thanks so much for writing! 🙂

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