6 Tips for Caring for a Family Member with Cystic Fibrosis

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5. Emotional Challenges for Caregivers

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As noted, caring for a patient with cystic fibrosis is not easy and it demands commitment. In addition to the physical features of the disease, patients are also more likely to develop emotional issues. Similarly, caregivers can also suffer emotional challenges. Even before the diagnosis, the process of seeking different physicians and looking for an answer can be frustrating. When the diagnosis is confirmed, parents may feel shock, denial and disbelief their child has CF, and grief as they mourn their hopes that their child would be fine and life would go back to normal.

Anger due to the situation and feeling what is happing is unfair is also common, as well as fear about their child’s health and life span. In addition, parents can also end up depressed, a deep and long-term feeling of sadness about either the diagnosis or the demands of life with it. Siblings are also affected by the disease and parents need to be particularly careful since brothers and sisters of children with CF may feel left out, neglected or jealous, due to the extra care given to their sibling and time spent with them.

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One comment

  1. Deb Haupert says:

    ACOG recommends pre conceptual testing for all women. Committee Opinion #486.
    Family history need not be present to have a child with CF or a child who is a CF carrier.
    Newborn screening does not identify all carriers.

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