Author: Lauren

Vertex, a Place Full of Progress

Last week, I had the privilege of touring the Vertex Pharmaceuticals building in Boston. Since the new building went up in the seaport district, I have driven by it many times, trying to snap photos out of the window or on the sidewalk. The fact that this company, that would ultimately create a drug that would change my life, has ben right in my backyard is really cool. I’ve been following the developments of CF drugs from Vertex since I was in high school almost 10 years ago. While I was off living my life, waiting around for something that...

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Orkambi Update!

It has been a month on Orkambi, and I’m already starting to feel the effects in a very real way. I didn’t want to post 2 weeks in because I knew a lot of what I was feeling was the placebo effect, but I have begun to notice my “new normal.” To start, and to clarify, Orkambi is not a cure. Many people have asked if I get to stop doing the treatments I do everyday and the answer is no. I’ll still have some mucus in my lungs, I still have a serious bacteria in my lungs, and...

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25 Wasn’t My Quarter Life Crisis

Today is the day I turn 25, officially a quarter of a century old. But 25 is more than just my “quarter life crisis,” I guess you could say it is an accomplishment. Aren’t all years of a life stamped with a young life expectancy an accomplishment though? This year is different. Because when I was born, the life expectancy for a female with CF was 25. Because even though my parents didn’t know it yet, I was a ticking time bomb and the statistics didn’t want me to reach today. But I did. I’ve heard the term “quarter...

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The Hope Roller Coaster

When you read about CF in most places, after explaining how it affects the lungs, the next sentence is usually “There is no cure.” This is a tough reality for people with CF, since for our whole lives, it has been almost certain that our disease will not get better… it will only get worse. CF doesn’t go into remission, we cannot take a vacation from it, and its course cannot be predicted. The only certainty about our futures is that they will be short. When I was born, the median age of survival for a female with CF was 25. Soon, by the time I was 15, the age jumped up to 35. Now that I’m 25, life expectancy for people born in 1990 has been estimated to be around 40.  With every year that goes by, people with CF are living longer and longer. And yet. These numbers never seemed big enough. Seeing a great difference in the life expectancy for CF compared to the time I was born is indeed progress. Each statistic means one more day that I get the opportunity to live. Each new drug will give us life. But a life expectancy of 40 meant I would never be a grandmother, I would never have a retirement, I would never sit on my doorstep in rocking chairs reflecting on a beautiful long life....

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Happy Tears

Yesterday was a crazy day. The FDA Advisory Panel was hearing presentations about why it should recommend approval for a drug that I’ve been waiting for for about 5+ years. I was reading a live blog here and there during the day, but I wanted to wait until I got home to hear the news. I told my mom not to tell me what the decision was… as this was a big moment for me and I wanted to read the news myself. So I got home, scrolled towards the end of the blog and read. “12 Yes, 1 No. The FDA Advisory Committee has recommended approval for Orkambi.” It was over-wheleming, surreal, happy and scary. It was a moment that has seemed so far off since I heard rumblings about this CFTR potentiator back when I was in high school. It was something that would change the way my cells function and make them function normally. A treatment like this has always given me hope, it’s been the light at the end of the tunnel, it has always been something that would eventually happen. But, it’s been a roller coaster ride. First Kalydeco was approved and I heard all of these miracle stories. Then, I would hear that the results for lumacaftor/ivacaftor (for my mutation) weren’t THAT good, investors were disappointed. Then someone would point out that it...

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