#250 Alive At The Right Time | Caitlin Weis, Ambassador of Cystic Fibrosis

Living with cystic fibrosis at 30. Caitlin Weiss was diagnosed at three months, hospitalised 96 times, and went from 50% lung function to over 100% in one week. Cystic fibrosis is a genetic disease that affects every organ in the body, and you cannot tell by looking at someone who has it. Close to 40,000 children and adults live with CF in the United States and about 105,000 worldwide. Caitlin Weiss is one of them. She was diagnosed at three months old. She has been admitted to hospital 96 times. She has been an ambassador for the Cystic Fibrosis Foundation for as long as she can remember, and she still hid her own diagnosis from almost everyone until she was in her twenties, because her mother used to walk her out of the room before the talks began so she would not hear how long people thought she had. In this conversation with Bart Berkey, recorded in Cancun, Caitlin explains what cystic fibrosis actually feels like from the inside, what changed when her mentor died, and what happened when a medication she had been denied three times was finally approved for her. WHAT CYSTIC FIBROSIS IS A genetic condition caused by a faulty protein that stops salt moving correctly in and out of cells, which produces thick sticky mucus in the lungs and digestive system. There are more than 5,000 known mutations. Caitlin carries two copies of Delta F508, the most common one. It shortens life expectancy and it is invisible from the outside. WHAT CHANGED FOR HER Caitlin had already been through two gene therapies that stopped working. She was in borderline liver failure and was denied the newer medication three times. She started planning a bucket list instead. Then her doctor called and said they were doing it anyway, with weekly liver monitoring. One week later her lung function went from 50 percent to over 100 percent. She now travels for a living. Children starting the same medication early are now being given a life expectancy of 65. CHAPTERS 00:00 The one thing she does that Most People Don't 00:51 Recording live in Cancun, and why Caitlin 01:23 The invisible backpack, and what she wrote on hers 02:39 I have cystic fibrosis 03:00 What cystic fibrosis actually is 03:21 Diagnosed at three months old 04:32 Kindergarten, and realising her life was not normal 06:05 The ambassador programme, and the raffle girl at five 06:34 Why her mother walked her out of the room 06:52 Working it out at seven years old 07:37 Making CF stand for cure found 08:01 96 hospital stays, and the mentor who shared her name 10:15 Why being kind is the cheaper option 11:56 Most people don't feel their lungs 13:07 Trikafta, and the two gene therapies that failed first 13:43 You don't have hope yet 13:59 Denied three times, and planning a bucket list instead 15:02 50 percent lung function to over 100 percent in one week 16:43 How the medication works, and 5,000 mutations 18:39 A life expectancy of 65 for children starting early 19:16 The grandmother at the walkathon 21:11 Seven continents, and finally being well enough 26:29 Fighting for a cure she does not expect to use 27:54 Most people don't ask questions 29:09 Oak tree or bamboo IF CYSTIC FIBROSIS IS PART OF YOUR LIFE Cystic Fibrosis Foundation: https://www.cff.org CF Foundation Compass is free, confidential, one to one help with insurance, costs, care and referrals. There is no income requirement. Call 1-844-COMPASS or email compass@cff.org ABOUT CAITLIN WEISS Ambassador for the Cystic Fibrosis Foundation. ABOUT THE SHOW Most People Don't... But YOU Do! is hosted by Bart Berkey, who spent 16 years as a global executive with The Ritz-Carlton before building Most People Don't, LLC. The show is in the top 2 percent of podcasts globally, with more than 250 episodes about the small, deliberate things that separate a good intention from an exceptional human experience. SUBSCRIBE AND LISTEN YouTube:    / @bartberkey_mostpeopledont   Apple Podcasts: https://podcasts.apple.com/us/podcast... Spotify: https://open.spotify.com/show/6MGmeT8... All episodes: https://www.bartaberkey.com/podcast FOLLOW BART LinkedIn:   / bartberkey   Instagram:   / bartberkey   Facebook:   / bart.berkey   TikTok:   / bart.berkey   WORK WITH BART Book Bart to speak: https://www.bartaberkey.com/booking-e... HUMANALITY keynote and certification: https://www.bartaberkey.com/speaking-... Sponsor an episode: https://www.bartaberkey.com/sponsorship Newsletter: https://www.bartaberkey.com/blog #CysticFibrosis #CFAwareness #LivingWithCF #Trikafta #RareDisease #ChronicIllness #InvisibleIllness #CureFound #CysticFibrosisAwareness #MostPeopleDont #BartBerkey #CaitlinWeiss #PatientStory #Resilience #Humanality