After six years of unexplained pain, severe itching, crushing fatigue, and dismissive medical encounters, Dr. Cecilia Duenas finally received a diagnosis of primary biliary cholangitis. In this episode, the bilingual clinical psychologist and patient advocate shares how cultural bias shaped her search for answers, why finding the right physician changed everything, and how her experience inspired her to champion patient education, culturally responsive care, and more representative rare disease research.

Dr. Cecilia Dueñas is a bilingual Spanish/English Latina Clinical Psychologist, mother of two, and wife based in Southern California. Diagnosed with Primary Biliary Cholangitis (PBC) in 2021 after more than six years of undiagnosed symptoms and healthcare inequities, she turned her personal journey into a mission to advocate for patients facing rare liver diseases and health disparities.

Cecilia’s lived experience as a Latina navigating a rare disease inspired her to share her story to empower others. Her advocacy began as a patient ambassador sharing her six-plus-year journey to diagnosis. She has participated in panels, webinars, and patient education initiatives in both English and Spanish. She has collaborated with major stakeholders, including Intercept Pharmaceuticals and Ipsen, contributing to educational campaigns, patient panels, commercials and videos aimed at increasing awareness and understanding of PBC among clinicians, researchers, and patients. 

Recognizing a significant gap in the representation of patient-owned, regulatory-compliant data, particularly for underserved populations like AMA-negative Latina PBC patients, Cecilia founded a PBC-focused research foundation in 2024. Her foundation prioritizes non-biased, patient-centered data collection and works in collaboration with regulatory boards, clinicians, and PBC stakeholders to advance research and treatment options for all patients.

Living with PBC can affect more than physical health. In this PBC Awareness Month episode, mental health counselor Natalie Thomas discusses mental health wellness, fatigue, brain fog, anxiety, grief, and resilience while living with Primary Biliary Cholangitis.In recognition of PBC Awareness Month, Livie welcomes licensed professional counselor Natalie Thomas for a conversation about mental health wellness and living with Primary Biliary Cholangitis (PBC) one of many invisible diseases.

Spoiler Alert; Their conversation leads to simple techniques to be more resilient.

Together, they explore the emotional realities of living with PBC, including fatigue, brain fog, anxiety, grief, social stigma, changing relationships, and the challenges of navigating an invisible illness.

Listeners will gain practical strategies for managing daily mental wellness, setting healthy boundaries, coping with loss, and finding self-compassion while living with chronic disease. This episode is a reminder that mental wellness is not separate from living with PBC. It is an essential part of healing, resilience, and living your best liver life.

In this special PBC Awareness Month episode of *Living My Best Liver Life*, Livie welcomes Dr. Robert G. Gish, a leading expert in liver disease, transplant medicine, research, and global liver health policy, for an honest and informative conversation about primary biliary cholangitis, or PBC.

Together, they break down what PBC is, why it can be difficult to diagnose, and what patients and families should know about liver enzymes, AMA testing, biopsies, risk factors, symptoms, and disease progression. Dr. Gish also shares insight into associated conditions such as thyroid disease, dry eyes and dry mouth, osteoporosis, celiac disease, vitamin deficiencies, fatty liver disease, and the importance of regular follow-up care.

This episode also explores the real-life challenges many patients face, including fatigue, itching, sleep disruption, brain fog, lifestyle changes, vaccines, nutrition, movement, and the emotional side of living with a chronic autoimmune liver disease. Livie and Dr. Gish discuss the importance of patient advocacy, knowing your body, asking questions, and partnering with healthcare providers to create an individualized care plan.

Whether you are newly diagnosed, still searching for answers, supporting someone you love, or simply wanting to better understand PBC, this conversation offers education, encouragement, and hope. You are not alone on this liver life journey.

LivingMyBestLiverLifewithLivieWells.com for PBC Merch PoP up shop. Mentioned during the conversation - Global PBC Foundation based in Edinburgh .

Friends of the PBC Foundation

Season 1, Episode 3 features Danielle, a respiratory therapist and PBC patient who shares her diagnosis journey, challenges managing multiple autoimmune conditions (including Sjogren's and MCAS), and the impact of working through the COVID pandemic. She discusses treatments, symptom management, lifestyle adjustments, and the emotional effects of chronic illness.

Danielle also highlights her advocacy work as president of Friends of the PBC Foundation, the importance of patient communities, and practical strategies for navigating care and preserving mental health while living with PBC.

* I would like to make a correction, please note that DAnielle has one very sweet, smart and talented cat named Juniper Peaches (JP) Yes, I did say that JP plays video games! 

In this episode of Living My Best Liver Life, host and guest Jackie discuss her diagnosis with primary biliary cholangitis (PBC), the long road to correct diagnosis, and the added challenge of fibromyalgia. Jackie shares how she manages fatigue, treatment struggles, lifestyle changes, and caring for her family— including her daughter’s recent health issues and gluten sensitivity. The conversation focuses on resilience, practical strategies, and the importance of support and self-compassion.   I am not a medical doctor. My guest is not a medical doctor. We are sharing our stories, experiences and advice. Please seek medical advice, testing and treatments from your medical doctor or specialist. If you are experiencing a medical emergency please dial 911 on your phone. 
If you are experiencing a mental health emergency please dial 988 on your phone. You can also text HOME to 741741 for the crisis text line in the US which is a free confidential service. 

 Please know you are loved,  you are not alone,  and I am here with you.

 
Xo Livie   

I’m excited and a little nervous to share this episode one of “Living My Best Liver Life”. In this first episode, I share the story behind the podcast, my journey through chronic illness and liver disease. I also share why advocacy matters so much to me.

My hope is that this podcast becomes a supportive space for patients, caregivers,  advocates, anyone looking for encouragement.

I’d love for you to listen, subscribe and send me your

“Itch or Bliss” for future episodes.

What’s a “Itch or Bliss” you say?

Tune in now and you’ll find out!