• Yesterday I got a screenshot of the FDA’s approval for what is now Trikafta: I’ve been on the study for the last 10 months — and hearing an actual name (aside from triple combo) is bonkers to me. What’s even more bonkers is how I feel: how my numbers have changed, and the ability to wake up and breathe without a slew of mucus const…[Read more]

  • Luisa Palazola posted a new activity comment 2 weeks, 6 days ago

    May you remind me of the name of your books, and I’ll be sure to look them up. And, jeez — post WWII was such an apocalyptic space for the world, toppled with the news of CF… I can imagine you took on that identity to not want to have CF.
      • The three books published since my transplant are :Bain’s New York. The City in News Pictures, 1900-1925; Sunny Land. Pictures from Paradise; and Some of Us. (The last two are collections of my photographs. You can see some of my pictures on my website: michaelcarlebach.com
      • Hi @rhealawton I am so sorry to hear about your husband, but what an incredible life — 51 years old. Thank you for sharing, but actually the photo is not appearing! You’re more than welcome to try reposting in a different format, or should you want to add my on social media (facebook or IG) and send me a photo through there, I would love to post for ya!

      • Proteostasis Therapeutics or PTI Biotech is a innovative biopharmaceutical company that is helping develop novel CFTR therapies, and more innovative methods of treating CF. Their big theme is approaching CF care from all angles of a patient’s care and also from different parts of the world. I was asked to speak a little on my story with CF and…[Read more]

      • Last night I was sharing my thoughts on Instagram stories, as I often do. I began reminiscing about childhood and all the things I used to innocently think. It started a dialogue with my CF friends, and we began sharing things related to how we saw CF when we were little, here are two of my absurd childhood thoughts:

        1. I was diagnosed late with…[Read more]

      • Luisa Palazola posted a new activity comment 3 weeks, 1 day ago

        Hi Kristy! I hope you are well 🙂 I wanted to take a moment to introduce myself, I am Luisa and I am 26 years old — and I also have CF! I also am one of the forum moderators here, along with @jennifer-livingston ! If you need anything, don’t hesitate to reach out 🙂
        • Luisa Palazola posted a new activity comment 3 weeks, 3 days ago

          I’m well! Head ache-y today, haha! But, on this particular forum, I don’t think so — but, we are so welcoming of others! However, I also manage our social media, and through Instagram, I’ve met various people from Australia with CF. And, yes — if you sift through the different forum topics, you’ll see we’ve got all sorts of discussions on…

          [Read more]

        • Luisa Palazola posted a new activity comment 3 weeks, 3 days ago

          Oh my gosh, that’s so cool. Are your books available to order on Amazon. And, I can’t imagine what it is like to lose four siblings. CF is brutal, especially when the medications and therapies haven’t been there. Also — I will be in North Carolina next month, but I am going to Charolette!
            • I think all of my books are available through Amazon, though I haven’t looked recently.
              When we were all growing up there wasn’t much talk about CF in the family, and about the only treatments available were antibiotics and back-slapping percussion. Terrible for our parents who had all those babies after WWII only to find out that the…

              [Read more]

              • May you remind me of the name of your books, and I’ll be sure to look them up. And, jeez — post WWII was such an apocalyptic space for the world, toppled with the news of CF… I can imagine you took on that identity to not want to have CF.
                  • The three books published since my transplant are :Bain’s New York. The City in News Pictures, 1900-1925; Sunny Land. Pictures from Paradise; and Some of Us. (The last two are collections of my photographs. You can see some of my pictures on my website: michaelcarlebach.com
              • Have you seen these stats before, our team at CF News Today came up with this neat infographic of strides recorded by the Cystic Fibrosis Foundation. And, I think it’s pretty phenomenal:

                For, me it’s boggling to realize that I am one of those people. I am one of those people who has not only benefitted from the newer medications and…[Read more]

              • Luisa Palazola posted a new activity comment 3 weeks, 4 days ago

                Hey Ashley, how’re ya?! I wanted to introduce myself — I am Luisa and I am 26 with CF. I also am one of the moderators here 🙂 How have you been? ALSO! So awesome you’re in Australia!
                • Luisa Palazola posted a new activity comment 3 weeks, 4 days ago

                  Hey Michael! So glad to have you on the forums. I am Luisa and I also have CF, and I am one of the moderators here at CF News Today. I think it’s so AWESOME that you had your transplant in 2005. How are you doing today?
                  • I’ve been dealing with pretty gnarly migraines over the last few weeks. I’m no stranger to migraines, in fact when I was 16, I was admitted because of getting migraines. That admission, I also had an MRI of my head — and, it turns out I have a birth abnormality called Arnold Chiari Malformation — type 1.5 to be exact. It’s the when the

                    “lower…[Read more]

                  • Head’s up! The CFF hosts an annual virtual event for people with CF for a “weekend of sharing, connecting, and learning as we join together for a free, two-day virtual event to discuss experiences unique to people living with CF.” This year it it is Sept. 20 and 21. Sign up…[Read more]

                  • Luisa Palazola posted a new activity comment 1 month ago

                    Pues todo bien por ahora, he tenido muchas problemas con la hemopytsis. Pero estoy en una de las estudias de Vertex, y ese medicina me ha cambiado todo. Y bueno, como el FQ es una enfermedad hereditaria, todo la vida. Pero me diagnosticaron un poco tarde — a las 9 años. Y vos, a que edad te diagnosticaron, como le va con tu salud?
                    • Luisa Palazola posted a new activity comment 1 month ago

                      Hi Jodie! I am Luisa and I am 26 and have CF — I see you’re a research RN. I am in a study and have been with my research nurse for the past 4 years, we spend so much time together that now she feels like a second mom to me <3 I hope you are well, and if you need anything or have any questions, I am here 🙂
                      • Luisa Palazola posted a new activity comment 1 month ago

                        Hi Hopson, how are you! I am Luisa and I am 26 and I have CF — I also am one of the moderators here 🙂 Do you have CF or does a family member of yours do? Either way, let me know if I can be of any help 🙂
                        • 1. Christina Randall’s channel. She is a becoming YouTuber who has chronicled her experiences in prison with rawness and realness; something totally foreign to me and I think offers a facet of life outside chronically ill life.

                          2. CG Kid is a recovering poly addict, and talks openly and honestly about drug addiction. Again, it’s something very…[Read more]

                        • I wrote this a few months ago, it’s an unedited culmination of my thoughts on living with CF:

                          “It’s CF Awareness Month. There are a lot of ways people choose to see their disease, if they even want to see it as a disease.

                          This is how I feel:

                          CF has made me confront my own mortality. CF has made me confront mortality of those I love.
                          CF has s…[Read more]

                        • Luisa Palazola posted a new activity comment 1 month ago

                          Hi Kaylee! How are you!

                          I am Luisa and I have CF, too. I am also a moderator here 🙂 Let me know should you need anything

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