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Study Trial Experiences
I’ve been in several study trials over the last few years, and I sometimes get asked doesn’t that scare you, you don’t know the side effects?
The truth is, my disease is really scary. Cups of blood from my lungs, trouble breathing and needing o2, and drowning in my own mucus are their own scary. That it’s worth it to me to take a shot in the dark, and see what an unknown medicine can do.
It also does take time, effort, and a plunge into the unknown.
But, in my experience, it’s been some of the smartest decisions of my life. One of those trials was for Symdeko a novel therapy, designed to treat the underlying cause of CF.
While my cohort of the trial got terminated early, there was a brief 3 months that I was on actual study drug. And, I believe that three months bought me good health and allowed me to keep pushing through until the next trial came around.
To me, it’s worth it.
1. Have you ever been on a study trial?
2. If so — was it worth it? Does anyone have any negative experiences? -
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