@luisa-palazola
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Luisa Palazola posted a new activity comment 4 months, 1 week ago
Hi Myrna! Thanks for joining the forums, we’re excited to have ya here. I am Luisa and I am an adult with CF — I see you’re a mama to one with CF and also a research chemist. Do you ever work with CF?
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Luisa Palazola started the topic For Older Folks with CF + Trikafta in the forum Adults With Cystic Fibrosis 4 months, 2 weeks ago
I have various friends who are older (40+) who are eligible and use Trikafta. Unfortunately, some of these friends aren’t seeing the same extent of benefit that Trikafta can have. I know this can be super disappointing and frustrating.
Are you on Trikafta? Do you feel like it’s not working as well as you expected?
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Luisa Palazola wrote a new item 4 months, 2 weeks ago
I have various friends who are older (40+) who are eligible and use Trikafta. Unfortunately, some of these friends aren’t seeing the same extent of benefit that Trikafta can have. I know this can be super d
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Luisa Palazola replied to the topic When did you first meet another person with CF? in the forum Adults With Cystic Fibrosis 4 months, 3 weeks ago
I was diagnosed a little later than the CF camps, so I never had that experience. I know I grew up (and still kinda am) paranoid of cross contamination, so I veered far away from CF’ers. BUT, my first best friend with CF went to high school with me — so we waved from a distance when we saw each other!
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Luisa Palazola replied to the topic Late CF Diagnosis in the forum Adults With Cystic Fibrosis 4 months, 3 weeks ago
Hi Bronwyn, thank you so much for sharing your diagnosis story. I am so glad your doc was able to get you a diagnosis — that is wild to hear you have such a rare mutation. Do you believe your scleroderma affects your CF related health (or vice versa)? Sending you good vibes!
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Luisa Palazola replied to the topic Late CF Diagnosis in the forum Adults With Cystic Fibrosis 4 months, 3 weeks ago
That’s incredible! I am glad your brother-in-law had you to nudge him towards diagnosis. I don’t believe there are any known diagnoses in my family. And, to my knowledge I only had a great aunt (passed in the 80s) who demonstrated signs of CF, but of course no one knew why she had chronic lung issues.
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Luisa Palazola started the topic What is the biggest shock since your diagnosis? in the forum Adults With Cystic Fibrosis 5 months ago
I’ve noticed there are a few folks here that are late diagnoses. I don’t have the same experience, and I only know a life with CF. So, the idea of being diagnosed late is foreign to me. I am so curious to know what your experience is like.
So – for those who have been diagnosed later: how has your life changed since your diagnosis? Do you…[Read more]
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Luisa Palazola wrote a new item 5 months ago
I’ve noticed there are a few folks here that are late diagnoses. I don’t have the same experience, and I only know a life with CF. So, the idea of being diagnosed late is foreign to me. I am so curious to know
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Luisa Palazola posted a new activity comment 5 months ago
Hi Laura Lee — welcome to the forums! I am happy to have you here. I am a co-moderator and I also have CF. I look forward to getting to know you!
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Thank you
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Luisa Palazola posted a new activity comment 5 months ago
Hi Courtney! I hope you are doing well. I am Luisa and I am also a moderator here (and I have CF!). If ya have any questions, please don’t hesitate to reach out.
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Luisa Palazola posted a new activity comment 5 months ago
Hello Leslie! I hope you are doing well — I am Luisa and I am Jenny’s co-moderator. I am happy to have you here. I read that you are a late diagnosis. There’s quite a few folks around here who are, too. If you’d like me to introduce you, I would be more than happy to.
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Luisa Palazola posted a new activity comment 5 months, 2 weeks ago
Ah, let me know if you have any more issues logging in. If so, I can definitely help with tech issues.
How do you feel since starting Trikafta, do you think it’s alleviated any gut issues?
Yes, CF can be so scary for some folks — thankfully modern medicine has helped so many folks. Looking forward to learning more about you! -
Luisa Palazola posted a new activity comment 5 months, 2 weeks ago
Hi Deanna — if there is not underlying reason not to, I definitely would push for Trikafta. It is quite literally a life saver for a lot of folks, myself included. Let us know any updates.
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Luisa Palazola posted a new activity comment 5 months, 2 weeks ago
Hi Deanna, I am glad to “meet” ya here. I have to agree with Jenny, your story is so interesting. I am the second moderator here, so if you have any questions feel free to reach out!
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Luisa Palazola posted a new activity comment 5 months, 2 weeks ago
Welcome Travis! I just saw your comment and read a little about your CF story. I am glad y’all have a diagnosis now — I imagine it’s not easy! I also have CF and happy you are on the forums — the CF community is one of the best 🙂
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Luisa Palazola replied to the topic Late CF Diagnosis in the forum Adults With Cystic Fibrosis 5 months, 2 weeks ago
Welcome Travis! I think it’s so interesting (and I imagine so difficult) that y’all had such a cluster of diagnoses! I agree, it is crazy to think of all the folks who have CF and aren’t diagnosed. Years ago it was almost unheard of to have a diagnosis later in life, but I am seeing more folks being diagnsosed.
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Luisa Palazola replied to the topic How is the pandemic still affecting your life? in the forum Adults With Cystic Fibrosis 5 months, 2 weeks ago
I saw this story! Gosh — I never thought I’d become one of these people, but I feel like I have almost forgotten about COVID. I think up until January this year I was pretty hands on (masks, being more choosey about where I spend my time, social distancing, etc). But, dang — I got worn out. Now I’ ve gotten my boosters and am getting my next one…[Read more]
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Luisa Palazola replied to the topic An Acronym Guide for the CF Community in the forum Cystic Fibrosis Resources 5 months, 2 weeks ago
<p style=”text-align: left;”>This is an awesome list! I’ve got a couple I can think of:</p>
1. PA: multiple uses
a)prior authorization (insurance related)
b) pseudomonas
c) physicians assistant
2. ENT — ear nose and throat
3. MRSA: Methicillin-resistant Staphylococcus aureus
4. GI — gastrointestinal
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Luisa Palazola posted a new activity comment 5 months, 2 weeks ago
Hiya Jean! I’m Luisa and I am a moderator her and I also have CF. I’m excited for to get to know you, let me know if ya have any questions.
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Hi, Luisa! Thx for saying hi! I have been having intermittent problems logging in but I think I have figured it out. I am 67, and just diagnosed in July! And just started Trikafta 3 weeks ago. I am lucky wrt my lungs. Gut is my big problem currently. I feel sad reading about others who have such bad cases of CF. // The forum is great – I will…[Read more]
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Ah, let me know if you have any more issues logging in. If so, I can definitely help with tech issues.
How do you feel since starting Trikafta, do you think it’s alleviated any gut issues?
Yes, CF can be so scary for some folks — thankfully modern medicine has helped so many folks. Looking forward to learning more about you!
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Luisa Palazola posted a new activity comment 5 months, 2 weeks ago
Hiya Joan! I’m Luisa and I am a moderator her and I also have CF. I’m excited for to get to know you, let me know if ya have any questions.
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Thanks, Luisa, for your message. You guys do a great job posting informative articles. I’m happy I joined the forum. Take care.
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