Cystic fibrosis is one of the most Remarkable stories in medicine
In 2014, I started this blog as a way to cope with my progressing cystic fibrosis (CF).
At the time, I was 23 and slipping into what seemed like a never ending cycle of life altering health issues. Back then, it felt like my college years were some of the most defining of my life. I left my hometown for Boston with a smile on my face, I returned home in a much different place physically. My CF was winning. I felt a responsibility to talk candidly about the independence I enjoyed in college, but also about the independence that my health took from me when I returned home four years later. Today, cystic fibrosis is a very different condition, and it serves as a model for how the gears of industry, academia and patients can come together to alter the course of medical history.
Along with my health, this blog has changed, too.
I quickly learned that my best chance of survival lay in my desire to learn about American health policy, drug development, care delivery and the nuanced way the global health system treats people living with chronic conditions. This blog details that journey and more. Over the last decade, I lived through the best parts of American care delivery and the worst, too. I felt hope through clinical trials, but also experienced unimaginable loss. Through this blog, I have seen my personality change time and again. My readers have also seen my personality change with each blog post. It’s my hope that this blog is a place for all of us to change and learn together.
What started as a coping mechanism transformed into anger when CF took loved ones away from me before finally turning into a journey through health policy and patient advocacy.
The beginning of my blog catalogue reveals a young man suffering greatly from an insidious health condition that infected every part of his life. It’s hard for me to recognize myself from all those years ago, but those tough times have helped shape me into the person I am today.
Today’s blogs are different. They pull back the curtain on the nuances of health policy across the globe. They are my documented journey through learning and enlightenment. They are a look into my life, my thinking and my hopes for tomorrow. In a lot of ways, I’ve grown up through this blog for the world to see. In truth, cystic fibrosis has become a model for changing the course of a once terminal health condition, and this blog served as a front row seat for the gears of change.
In Healthcare, patients are left on the outside looking in.
that needs to change.
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I got a question from a reader not too long ago that asked: “What do you do when you are just so sick and fed up of...
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DISCLAIMER
*Nothing contained in these blog posts, podcasts, images, or any other posts should be considered medical advice. Such advice can only be given by a physician who is experienced with cystic fibrosis. The contributors on this blog/podcast cannot be held responsible for any damage which may result from using the information on this blog/podcast without permission of their medical doctor. Furthermore, the views expressed on this blog are solely those of the contributors and do not represent the views or opinions of the writer's employer(s) unless explicitly mentioned.