William
Forum Replies Created
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Partnerships in CF are the best way to tackle CF!
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What would you say has been the most beneficial food item in this protein-rich diet?
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That’s awesome! Hopefully, you can travel to a new location this summer that’s been on your bucket list.
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What’s your favorite beach that you’ve ever been to?
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Yes! Hopefully, some of the drugs in the pipeline that are undergoing testing will be approved. Therefore, more people will have more opportunities to live a full life with CF modulators.
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I’m not sure about Trikafta, but Alyftrek has helped improve my liver numbers a bit! I’ve mostly purged a lot of mucus every few days. Keep in mind, though, everyone is different!
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William
MemberJanuary 7, 2026 at 7:23 pm in reply to: What music have you been listening to this year?Awesome! Hope some great tunes are coming your way!
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Every body’s body reacts different and I’m glad Trikafta works for you!
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It’s definitely the medication. I know I had some of those symptoms initially after starting it. They’ll eventually phase out and you’ll be okay.
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Thanks, Lin! If you’re in the US try reaching out to your state college’s hospital. They generally have CF departments.
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Absolutely! That’s what we’re here to do.
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William
MemberNovember 6, 2025 at 6:05 pm in reply to: Introduction to our late diagnosis subforum!It will stand for cure found one day!
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Are there any activities you enjoy doing outside?
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Definitely! And great doctor appointments never hurt, either.
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I can imagine! Did parents ever give you any pushback?
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Do you use a nasal spray in addition to these helpful devices?
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Wow! I’m sorry to hear about your sister. While that’s tragic, I’m glad to hear that you’ve been able to live a long life.
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Wow, Kristina! All of that testing, but never retesting for CF is astounding. For quite a long time, medical officials really stuck to a strict textbook definition of CF. Reasonably so, because it was very binary back in the day. Thankfully, you have a proper diagnosis!
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The purge is when a person with cf gets up a lot of mucus and goes through flu/fever like symptoms. It’s just the medicine working through one’s body.
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How’s it been going so far?!
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That was so kind of them! I hope your spouse enjoyed the meal, too.
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What are some signs that your body sends you that you can often ignore?
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Unfortunately, it seems like the big beautiful bill may cut a lot of funding for research and medicaid. Hopefully, people will soon realize how damaging it will be.
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Sterilize every day! It’s paramount to maintaining good health.