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Living With CF

Claire Wineland and Mizuho Spangler, DO
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Mizuho sits down with Claire Wineland a patient with Cystic fibrosis to learn what it is like to live with a chronic progressive terminal illness. Claire opens up about her experience.

 
 

Pearls:

  • We can help patients with terminal illnesses realize that they are not bound by their disease and can find meaning in life beyond just  getting well.

 

  • Claire Wineland is 20 year-old nationally renowned public speaker with cystic fibrosis.

  • She has spent nearly a quarter of her life in hospitals and now offers powerful insight into what it is like to live with a terminal illness.

  • Healthcare workers tend to view patients in terms of their illness (i.e. the 9-year-old with appendicitis).

  • Patients with terminal illness can find empowerment through study and ownership of their own illness.

    • Taking ownership of one’s physical space in the hospital (i.e. decorating a hospital room) can create a safe and comfortable environment.

  • Doctors should encourage patients to create space to live a rich and fulfilling lives outside of the treatment of their disease and to discourage fixation on just “getting better”

  • It does a disservice to our patients to support the idea that one cannot live a fulfilling life until they are healthy.

  • We can help terminally ill patients realize their dreams in the time that they have left because there may never come a time where their disease is better than it is right now.

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Jingle, Jingle Full episode audio for MD edition 178:44 min - 84 MB - M4AHippo Primary Care RAP - December 2017 Summary 310 KB - PDF

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