Cystic Fibrosis & Patient Leadership: Caleigh Haber’s Journey

What does it mean to truly fight to breathe?In this MedTalk, I speak with patient advocate and consultant Caleigh Haber, who has lived with Cystic Fibrosis for 35 years and has undergone two double lung transplants and three open-heart surgeries.What began as a conversation about patient engagement quickly became something deeper — a powerful story about resilience, family support, survival, and turning lived experience into leadership.Caleigh shares her journey from being diagnosed with cystic fibrosis at birth to navigating childhood treatments, hospitalisations, and the complex transition into adult care. She and her mum openly speak about the rapid decline of her health, the challenges of medical trauma, and the long road that ultimately led to not one, but two life-saving lung transplants.One of the most touching parts of this conversation was witnessing the extraordinary teamwork of her family. Her mother, Lizeth Haber, her childhood friend Sahani Chandraratna, her husband Bryan Takayama, and patient advocate Jamie Tierney all contributed to the discussion — showing how no patient journey happens alone.What emerged from this conversation is a powerful reminder:Patients are not just participants in healthcare.They are experts in their own experience.Today, Caleigh works as a patient engagement consultant and is the founder of Fight2Breathe, a global community supporting people affected by cystic fibrosis and chronic illness. Through her work, she helps researchers, healthcare organisations, and industry partners understand how lived experience can meaningfully shape clinical research and healthcare decisions.Clinical research needs patients.But healthcare also needs to listen to them earlier and better.This MedTalk was an incredibly moving conversation, and I was deeply impressed by the strength of Caleigh and the unwavering support of her family.If you work in clinical research, healthcare, patient advocacy, or medical communication, this discussion offers valuable insight into what patient-centred research truly means.Follow and learn more about Caleigh’s work:Fight2Breathe community and patient advocacy initiatives.#CysticFibrosis #DoubleLungTransplant #PatientAdvocacy #Fight2Breathe #PatientVoice #ClinicalTrials #PatientEngagement #RareDisease #HealthcareInnovation #MedTalk #MedicalCommunication