I think we all idealize the day the that CF stands for Cure Found. And, don’t get me wrong — I can’t wait for that moment. But, from my experiences on the most promising CFTR modulator, it’s a big change in a short bit of time.
When we say cure found, especially for older patients. What does that mean? Do all of our symptoms cease over night? What about the lung damage, GI scars, and port a caths that are nestled in our chests? Does it all come to an end?
More importantly, what about all of our learned ways of surviving? Most of us have spent our days intentionally driving to live, hyper aware of what our bodies will do if we just stop.
In a lot of ways, as badly as we need a cure. As badly as I want a cure. It takes time to adjust to new things, even when they’re as beautiful as new life.
I would say a cure found means that we are able to, physically, live more normal lives. The mental aspect is what is truly fascinating to me. There’s obvious trauma that comes along with having a terminal illness. That would definitely require a lot of therapy.
@williamryan it really is fascinating to think of. I think we are so entrenched with CF and don’t quite ever get a break, that we don’t totally process the trauma that goes alongside it, or the attachment there is to your body. Living a more normal life is awesome, but it feels like something is missing!
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