Viewing 1 reply thread
  • Author
    Posts
    • #14075
      Jenny Livingston
      Participant

        Happy Monday! Today we’re stoked to have Nick as our MCM. @nick_landt_music is 29 years old and is from Atlanta, Georgia! Here are three things about his life with CF that he wants you to know. Be sure to answer his question in the comments below!⁣



        😎I was diagnosed with CF at 3 months old due to having failure to thrive. My gene mutations are Delta F508 and R560T. Having CF has just always been normal to me. I never really let it get in the way. I always found a way to manage meds and treatments around a fulfilling life. ⁣

        😎My biggest passion is writing music. I’m a guitar player and have been for 16 years. I have a rock band with my identical twin brother and we’re getting ready to release our second album in March 2020. Our IG is @landtband for those interested in keeping up with us. ⁣

        😎The last few years with CF have been really hard and emotional at times. I have been in and out of the hospital every few months. My lung function has been below 30% for the last 2 years and I’d reached the point of being evaluated for transplant. We held off on transplant because I was still considered too healthy to list and we knew the new triple therapy drug was right around the corner. Feeling ever more positive and hopeful about the rest of my life since starting Trikafta. It’s seriously a game changer!⁣

        Question: What would you do with a new lease on life?⁣

        Originally posted on Instagram

      • #14084
        Christina Kolassa
        Participant

          Trikafta changes things! I hope you have as much success as our son has had over the last year. He is in the trial for VX-445, now known as Trikafta, and it has completely changed EVERYTHING! Thank God for the scientists at Vertex, especially Alex Abela the one discovered the molecule!

      Viewing 1 reply thread
      • You must be logged in to reply to this topic.

      ©[current-year] KLEO Template a premium and multipurpose theme from Seventh Queen