Kelly speaks with openness and wisdom about living with a condition that is not life-threatening, but deeply life-altering – wet age-related macular degeneration (Wet MD). From the shock of her first diagnosis to the reality of ongoing eye injections, she offers a candid look into the emotional, physical, and practical challenges of losing central vision. She shares a down-to-earth approach to adapting to her new condition, reflecting on the balance between what we can and cannot control, the importance of medical research, and the need for more compassionate health insurance systems. Her story is not just about vision loss – it is about perspective and finding peace in the journey.

The song that Kelly selected is Time by Lauren Daigle and Aodhan King.

Daniel lives with a rare genetic condition, Tuberous Sclerosis Complex (TSC), that results in non-cancerous tumors to grow in various organs, including the brain. From being diagnosed as a child through visible skin signs to managing the complexities of healthcare and advocacy as an adult, Daniel’s journey is marked by courage and community. He opens up about the challenges of transitioning into adulthood, navigating a flawed healthcare system, and carrying the weight of an invisible condition. Daniel is passionate about ensuring adults with TSC are not forgotten and that healthcare becomes a human right, not a privilege.
He chose the song (Everything I do) I do it for you by Bryan Adams.

Nate shares his journey with HLH (hemophagocytic lymphohistiocytosis), a rare and life-threatening immune disorder. Misdiagnosed with Crohn’s disease, he endured over 16 surgeries and a complete removal of his colon before receiving the right diagnosis, leading to a bone marrow transplant that saved his life. Nate reflects deeply on his path so far, marked by systemic healthcare issues, a search for his own identity, and a drive to advocate for himself and others. Nate also discusses how being a queer Black man with a rare condition has shaped his experience of the world and his passion for health equity, leading to a degree in Health Services Management. Nate’s story is a powerful testament to resilience, authenticity, and the importance of being seen and heard as your true self.

The song Nate chose is Alien Superstar by Beyoncé.

Rob shares his personal journey growing up with severe haemophilia A, a rare bleeding disorder. Diagnosed as a baby due to family history, Rob and his brothers inherited the condition from their mother, who is a carrier of a mutated gene leading to haemophilia. His story spans from childhood limitations, frequent injections, and a sense of isolation, to the profound impact a life-changing treatment can have. Rob also reflects on what it means to work in clinical research while being directly impacted by its advances. This episode is a compelling testament to resilience, progress in medicine, and the hope that future generations may never experience what he and his brothers did.

The song that Rob chose is Iris by The Goo Goo Dolls.

Taylor shares her traumatic and transformative journey of being diagnosed with a rare condition – atypical hemolytic uremic syndrome (aHUS) – triggered during childbirth. Her story is one of medical chaos, survival against all odds, and learning to mother through unimaginable obstacles. With grace and humour, Taylor opens up about the physical devastation of her illness, the emotional toll of being separated from her newborn daughter, and the importance of timely diagnosis and innovative treatments. She also reflects on how becoming a patient changed her relationship with vulnerability, resilience, and advocacy.

The song Taylor chose is Be (For July) by Dustbowl Revival, written by her husband Zach Lupetin for their daughter.

Kevin opens up about living with PKU, a rare metabolic condition diagnosed at birth that requires lifelong dietary management. As a passionate advocate and storyteller, Kevin walks us through his journey, from early challenges of growing up with a restrictive diet to becoming a global voice for the PKU community. The conversation dives into mental health, feelings of isolation, access disparities in healthcare, and the healing power of music and connection. Kevin’s vulnerability and perspective offer not just education, but comfort to others navigating rare diseases.

The song that Kevin chose is Shadow Days by John Mayer.

A first on the podcast, Sylvain welcomes two guests, Kristina Morgan and Sana Ansari, both living with Type 1 Diabetes. They each have a very different journey with the condition: Kristina was diagnosed at age 7, while Sana received her diagnosis at 38, during the peak of the COVID-19 pandemic.

Their conversation is both heart-opening and educational, shedding light on what it's truly like to live a "prescribed life" and how chronic illness reshapes relationships, routines, and self-perception.

The episode explores the emotional landscape of diabetes, from the guilt around food choices to the fear of unpredictable lows and highs, and the impact of the diagnosis on identity. Despite the challenges, Kristina and Sana share how their friendship and shared experiences have fostered mutual support and understanding in both their professional and personal lives.

In this moving episode, I speak with Sarita Edwards, a mother, advocate, and founder of the E.WE Foundation, about her family's journey after her son Elijah was diagnosed with Trisomy 18 (Edwards syndrome). Sarita shares the emotional rollercoaster of receiving Elijah’s diagnosis at 22 weeks pregnant, the constant message of hopelessness delivered by healthcare professionals, and the overwhelming fear of loss that followed. Sarita explains how she fought this fear with hope and love, sharing a strong message of resilience.

Elijah, now eight years old, defies all medical expectations. Sarita’s deep reflections explore how grief, uncertainty, and stigma transformed into purpose, acceptance, and connection. Through their journey, she and her family built a foundation to support other families navigating rare diagnoses, aiming to provide practical answers to questions that many face in times of uncertainty.

This episode is a powerful reminder of how lived experience changes lives, and how hardship can lead to a sense of purpose, and be turned into positive actions.

The song that Sarita chose is Even If by MercyMe.