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Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down

“Lack of effort and persistence”  Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
The Keys to Good Relationships With Your Care Teams

The Keys to Good Relationships With Your Care Teams

Being born with cystic fibrosis, a progressive, genetic lung disease, I have had countless health encounters throughout my life. Through these experiences I have learned the power that lies in self advocating for my health in the clinic setting with my doctors and...
Participatory Medicine is Where You Find It

Participatory Medicine is Where You Find It

Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it’s my mission to ensure that patients’ perspectives are represented  early...
Healthcare as a Meeting of Two Experts

Healthcare as a Meeting of Two Experts

When I was training to become a clinical psychologist, my supervisors gave me several pieces of great advice. One told me that the psychologist or therapist is the expert on mental health treatment and research but the patient or client is the expert on their own...

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