Can We Cure PBC? Inside the Race to Stop an Autoimmune Liver Disease | Carol Roberts - President, The PBCers Organization
Imagine being exhausted all the time, dealing with an itch that can become unbearable, and worrying about progressive liver damage - yet having everyone around you tell you that you look perfectly healthy. That's the reality for many people living with Primary Biliary Cholangitis, or PBC. But here's the fascinating question: if PBC is fundamentally an autoimmune disease, can we eventually do more than treat the consequences - can we actually teach the immune system to stop attacking the liver?
Primary Biliary Cholangitis, or PBC, is a rare, chronic autoimmune disease that damages the small bile ducts within the liver and can ultimately lead to progressive liver damage.
Carol Roberts is President of The PBCers Organization ( https://pbcers.org/ ), the patient-led organization that has spent three decades supporting people living with PBC, their families and care partners, while working to increase awareness, reduce stigma and advance the patient voice in research and treatment.
Carol has been involved with PBCers for more than two decades and has become one of the organization's leading voices for the PBC community. She brings not only years of patient advocacy experience, but also her own lived experience with PBC.
We're speaking with Carol during PBC Awareness Month following the release of the organization's new Voice of PBC national survey, which captured the experiences of 210 people living with the disease.
The findings provide a remarkable window into the reality of PBC - from debilitating fatigue and itching to anxiety about disease progression, financial strain, and the stigma that can come from having an illness that often isn't visible to other people.
We'll talk about what PBC actually is, why it is so often discovered through routine bloodwork, why fatigue and pruritus can be so devastating, what has changed in the treatment landscape, and what patients still need from researchers, physicians and the broader healthcare system.
And perhaps most importantly, we'll talk about what it means to live with a disease that you often can't see - but that can profoundly shape virtually every aspect of a person's life.
#PrimaryBiliaryCholangitis #PBC #PBCAwareness #AutoimmuneDisease #LiverDisease #RareDisease #WomensHealth #LiverHealth #Autoimmunity #Immunology #DrugDevelopment #Biotech #Biopharma #MedicalResearch #PatientAdvocacy #ChronicDisease #HealthcareInnovation #FutureOfMedicine #PBCers #ProgressPotentialAndPossibilities
Altri episodi di "Progress, Potential, and Possibilities Podcast / Show"
Non perdere nemmeno un episodio di “Progress, Potential, and Possibilities Podcast / Show”. Iscriviti all'app gratuita GetPodcast.
