By: Amy Sylvis, Patient Partner, Keck Medical Center, USC
It's an incredible privilege to participate in the network as a Patient Partner. From my early 20’s I realized that CF care can vary dramatically from center to center - and I have worked ever since to find ways to improve care and outcomes for my fellow CFer's. You name it, I've explored it - eFlow long before Cayston was on the market, sex hormones in CF, the role of environmental allergies in CF, infection control, aspergillus in CF, alternative treatments (NAC, essential oils), CFRD diagnosis not by OGTT but by patient finger testing, etc. Everyone with CF deserves outstanding, effective and cutting-edge CF care to live long, healthy lives; and I have the delusion, or, belief that I can make a difference.
I'm thrilled to learn from others in this Network - to see what I borrow to implement in my CF center and beyond. I am also very excited for the support that the Network provides - we are paving the road to an elevated form of healthcare where patients are highly involved; this can sometimes cause bumps in the road and support is the way to continue to move forward to achieve our goals. Finally, I'm excited to represent my CF center and to highlight what they do well, and also dig in more deeply with my center to make improvements where they are warranted. I believe not only that can Keck Medicine of USC can be a top 10 center nationally, but it can lead the way in patient care and help the rest of the nation improve the lives of CFer's as well.