Log In or Register to Join The Conversation!
Viewing 1 reply thread
  • Author
    Posts
    • #12782
      Luisa Palazola
      Keymaster

      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.

    • #12787
      William
      Participant

      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.

      • #12789
        Luisa Palazola
        Keymaster

        @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!

Viewing 1 reply thread
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account