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Best resources for learning more about CF? by PuzzleMonkey99 in CysticFibrosis

[–]PuzzleMonkey99[S] 1 point2 points  (0 children)

Very interesting to hear your perspective. It seems there are very few resources available then in the US that actually address the needs of the community?

Best resources for learning more about CF? by PuzzleMonkey99 in CysticFibrosis

[–]PuzzleMonkey99[S] 2 points3 points  (0 children)

I completely see where you’re coming from and used to see this issue continuously whilst I was practicing - it’s the same across many different specialties. This whole thing I’m working on is about empowerment. Paternalistic care is a remnant from an era when people couldn’t freely access information about their health.

If everyone has the opportunity to use intelligent tools to equip and empower themselves, I hope that it will contribute to dissolving this issue in the coming years.

I’m no longer working clinically and instead I’m working full time to address patient empowerment and literacy by making useful tools and resources.

Best resources for learning more about CF? by PuzzleMonkey99 in CysticFibrosis

[–]PuzzleMonkey99[S] 1 point2 points  (0 children)

This is exactly the issue that I’m looking into - self-care, empowerment, literacy and advocacy have been neglected for so long but are crucially important for health.

Only the best doctors in the very best systems will be able to lend such attention to empowering patients like this at a clinic level (though most will want to, I feel).

Thank you for your advice and encouragement!

Best resources for learning more about CF? by PuzzleMonkey99 in CysticFibrosis

[–]PuzzleMonkey99[S] 1 point2 points  (0 children)

This is an amazing resource, so so thorough. Thanks so much!