I remember being really upset when I learned that most men with CF are infertile. Men, do you remember the day you found out? How did you feel? Have you thought any more about having kids since then? Do you plan on having kids?
One of the worst days of my life was discovering that CF was a life-shortening disease. I remember being heartbroken for weeks over it.
Do you remember that day? How did you discover it? How did you feel afterward?
This is a safe place to talk about an obviously devastating day.
Alcohol-based hand sanitizer is one of the most important aspects in a person with CF’s toolkit. Do you carry around hand sanitizer everywhere? Or do you just try to wash them as frequently as possible? Do you feel like it helps, both physically and mentally?
I know it’s something I have to get better about, but I really have a hard time wearing a mask in public places. I don’t like being stared at. It’s something I’m working on.
- Do you wear masks in public places? Do you feel like you have to or do you just like taking the precaution?
- Do you feel like people stare at you? Does it bother you?…
It’s a common experience in the CF community to wonder about resistance and the bacteria in their lungs.
- Do you worry about resistance?
- Do you put a lot of weight in your cultures?
- How do you feel about resistance and the concern in the CF community?
- Importantly – do you understand how resistance develops? And do these questions s…
I think it’s fundamentally important that we have at least a base understanding of science.
- Do you feel like you’re scientifically literate? In what ways?
- What do you wish you were more literate about?
- Do you feel like you’ve had a chance to learn?
Were you a part of the VX-659 trial? (I’m pretty certain this can be disclosed since they’ve announced the results.) What kind of benefit did you see? Did you have any side effects?
Do you feel okay with knowing Vertex selected to pursue VX-445?
Were you a part of the VX-445 trial? (I’m pretty certain this can be disclosed since they’ve announced the results.) What kind of benefit did you see? Did you have any side effects? Are you confident that this drug will help others?
Patient relationship with their care team is of the utmost importance. Studies have shown that patients who have good relationships with their doctors attend appointments more frequently and better adhere to their treatment plans.
- What is your relationship with your doctor like?
- In what ways could it be better?
- What are some things…
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