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

Caitlin Weis was diagnosed with cystic fibrosis at three months old. She has been admitted to hospital 96 times. For twenty five years almost nobody outside her family knew, 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. What makes that strange is that she was never actually hiding. She has been an ambassador for the Cystic Fibrosis Foundation for as long as she can remember. She was five years old selling raffle tickets at their fundraisers, working a room for a cause that was her own life, and saying nothing about herself. In this conversation with Bart Berkey, recorded in Cancun, Caitlin talks about what ended that. Her mentor, a woman who also had cystic fibrosis and who happened to share her name, died in her twenties. Caitlin used to call her for everything. She decided she did not want it to be in vain, so she started speaking. She explains what CF actually is, a genetic disease that affects every organ and that you cannot see from the outside. She talks about being denied a new medication three times because she was in borderline liver failure, about starting a bucket list instead, and about the phone call that changed it. One week after starting the medication she went from 50 percent lung function to over 100 percent. She also says the line the episode turns on. She will most likely never see a cure, and she is okay with that, because the people she is fighting for are the children being born now. In this episode: The invisible backpack, and what she wrote on hers What her mother said instead of you are different Why she says being kind is the cheaper option Two gene therapies that failed, and the third she almost refused 50 percent lung function to over 100 percent in one week The grandmother at a walkathon who had never met anyone with CF over 30 Fighting for a cure she does not expect to use The one thing she does that Most People Don't IF CYSTIC FIBROSIS IS PART OF YOUR LIFE Cystic Fibrosis Foundation: https://www.cff.org CF Foundation Compass, free and confidential help with insurance, costs, care and referrals: 1-844-COMPASS Most People Don't... But YOU Do! is hosted by Bart Berkey, who spent 16 years as a global executive with The Ritz-Carlton and now builds HUMANALITY, a system for making people feel cared for, valued, seen and heard rather than processed. Listen, subscribe and share: https://www.bartaberkey.com/podcast