Although the initial diagnosis for cystic fibrosis seemed to elude our doctors, we knew in our hearts that our son had cystic fibrosis. When we advocated for and got a CF doctor, we began a relationship that became a partnership of mutual trust and respect.
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My daughter, Lauren, didn’t know that having a lung transplant would greatly increase her risk for cancer until it was too late. Her death has taught me how important it is to know the health risks faced after transplant and our need to advocate for ourselves.
Gerry Sweeney
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6 min read
Since my daughter, Kinley’s, cystic fibrosis diagnosis, I have come to rely on her care team. We have become a true team in Kinley’s care.
Kristina Kuska
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5 min read
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.
Stacy Allen
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5 min read