Our Monthly Podcast
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Media Producer Niall McKay. Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
Episode 26 -- Fecal Microbiota Transplantation and Link Between Gut & Liver: A Discussion with Dr. Cyriel Ponsioen
In episode 26, Host Niall McKay talks with Dr. Cyriel Ponsioen, senior staff member at the Department of Gastroenterology & Hepatology at the Academic Medical Center (AMC) in Amsterdam, about research being done to determine the benefits of fecal microbiota transplantation in PSC patients with IBD. During the conversation, McKay and Ponsioen also speak about antibiotics, bacteriophages, the creation of the International PSC Study Group, and more.
"In PSC, there's only very limited data on the effect of (fecal microbiota transplantation)," said Dr. Ponsioen. "We used to think that we should look for the bad bugs, but, nowadays, we're more inclined to think that we should look for the good bugs. If we are able to identify which good bugs you need that are lacking in people with ulcerative colitis or Crohn's disease who also have PSC, then we're on a good track."
Episode 25 -- Use of Antibiotics for Clinical Treatment of Cholangitis in PSC: A Discussion with Dr. Gideon Hirschfield
In this episode, Host Niall McKay talks with Dr. Gideon Hirschfield about the use of antibiotics for the treatment of infection in primary sclerosing cholangitis (PSC). Hirschfield says that antibiotics are used for the treatment of intermittent, symptomatic cholangitis in patients with PSC.
"There's no evidence that the long-term use of antibiotics will change what ultimately happens to PSC patients," says Dr. Hirschfield. "But there's definitely evidence that, once you've got an infection, that drives PSC progression, which makes sense. Once the biliary tree is inflamed, it's never the same."
Dr. Hirschfield is the inaugural Lily and Terry Horner Chair in Autoimmune Liver Disease Research at the Toronto Centre for Liver Disease, Toronto General Hospital, and Professor of Medicine in the Division of Gastroenterology at the University of Toronto.
Episode 24 -- PSC Recurrence After Transplant and the Importance of Support: A Discussion with Post-transplant PSC Patient Mónika Aldarondo
"It's been interesting to learn that recurrent PSC does not follow the same trajectory or path as your original PSC," says Aldarondo. "So far, for me, this has been a really different experience."
In the podcast, McKay and Aldarondo cover several interesting topics, including:
- Long-term Prognosis and Recurrence of Primary Sclerosing Cholangitis After Liver Transplantation: A Single-Center Experience
- Ring Theory
- Spoon Theory
- But You Don’t Look Sick
- PSC Partners Mentor Program
Episode 23 -- PSC & Diet, Understanding IBD/PSC Relationship, and MORE, A Discussion with Dr. Josh Korzenik
In episode 23, Host Niall McKay talks with Dr. Josh Korzenik, gastroenterologist, director of the Resnek Family Center for Primary Sclerosing Cholangitis Research, and director of Brigham and Women’s Hospital Crohn’s and Colitis Center at Harvard Medical School.
"In order to understand PSC, we need to understand (IBD). That's the best clue we have, and in order to understand (IBD), we need to understand PSC. We think that (they) hold valuable insights for the other," says Dr. Korzenik.
Episode 22 -- The Importance of the PSC Partners Registry: A Discussion with Registry Director Rachel Gomel
In episode 22, Host Niall McKay talks with PSC Partners Patient Registry Director Rachel Gomel about the value of the PSC Patient Registry and the importance of this database in the search for treatments and a cure for PSC.
"The collected information helps in our understanding of where our rare patients are located. The registry also shows us who could be a match for a specific clinical trial, and how aggregated data collected on patients can show disease trends and unmet needs," says Gomel. "The privacy of the patients is of utmost importance to PSC Partners," she adds.
Episode 21 -- Microbial Metabolism and PSC: A Discussion with Dr. Hov
In episode 21, Host Niall McKay talks with Dr. Johannes Hov, professor of gastroenterology, University of Oslo, Norway, member of the Norwegian PSC research group, and member of the PSC Partners Scientific/Medical Advisory Committee (SMAC). They discuss research being done on PSC and the microbiome.
"What we have been doing, so far, is really to study the composition of the microbiome in patients with PSC. What we have found is that it's a lot different from individuals who are healthy, but what does this mean? That's really the big question."
Hov and McKay explore this in this episode of the Living with PSC Podcast.
Episode 20 -- Liver Transplants and PSC: A discussion with Dr. Julie Heimbach, transplant surgeon and surgical director of Liver Transplantation at Mayo Clinic
In episode 20, Host Niall McKay talks with Julie K. Heimbach, M.D., transplant surgeon and surgical director of Liver Transplantation at Mayo Clinic. They discuss various aspects of PSC and liver transplants. "Ideally, we could provide (liver transplants) at the exact time when it is appropriate for the patient. Unfortunately, there are not enough donor livers available for that to happen," Dr. Heimbach tells McKay in this podcast.
Episode 19 -- Pediatric PSC with Cara Mack, MD, University of Colorado School of Medicine and Children's Hospital Colorado
In the 19th episode, Host Niall McKay talks with Dr. Cara Mack, University of Colorado School of Medicine and Children's Hospital Colorado, about pediatric primary sclerosing cholangitis (PSC). They discuss treatments being investigated, symptoms, liver transplant, the hygiene hypothesis, and more.
Episode 18 -- Discussion with Dr. Nathan Baggett, PSCer, Medical Resident, and Multiple Liver Transplant Recipient
In the 18th episode, Host Niall McKay talks with Dr. Nathan Baggett, medical resident and PSCer who has undergone multiple liver transplants.
“I never wanted PSC to put limits on how I live my life,” says Dr. Baggett.
Episode 17 - Dr. John Eaton, Current and Future Prospects in PSC Research and Treatments
In the 17th episode, Host Niall McKay talks with Dr. John Eaton, MD, transplant hepatologist and gastroenterologist at Mayo Clinic, about the future with regards to discovering new treatments and, eventually, a cure for PSC. “I am more optimistic than I have ever been about the future prospects of caring for people with PSC,” states Dr. Eaton.
Episode 16 – Dr. Jerome Schofferman, PSC: A Patient-Doctor Perspective
In the 16th episode of Living with PSC, Niall McKay talks with Dr. Jerome Schofferman, MD, about his dual role as PSC patient and physician and what it has taught him about living with a chronic illness, treating patients, and including caregivers in the process.
Dr. Schofferman, MD., is a retired Internist and Pain Medicine Specialist from Sausalito, CA. Check out this episode!
Episode 15 – Dr. Christopher Bowlus, Drug and Clinical Development for Treatment of PSC
In the 15th episode of Living with PSC, Media Producer Niall McKay talks with Co-Chair of PSC Partners Medical Advisory Committee Dr. Christopher Bowlus, Division Chief of Gastroenterology & Hepatology and Professor at UC Davis School of Medicine, about drug and clinical development in the search for treatments and a cure for primary sclerosing cholangitis (PSC). Check out this episode!
Episode 14 – Dr. James Tabibian, Vancomycin as a Treatment for PSC
In the 14th episode of Living with PSC, Media Producer Niall McKay has a conversation with Dr. James Tabibian, a gastroenterologist and director of endoscopy and resident research director at Olive View-UCLA Medical Center, about the possible use of Vancomycin as a treatment for primary sclerosing cholangitis (PSC).
Episode 13 – PSC Partners Conference Conversations
In the 13th episode of Living with PSC, Niall McKay talks with attendees, presenters, and hosts at the 15th Annual PSC Partners Conference. Check out this episode!
Episode 12 – John Crowley: Living Donor Transplants and PSC
In the 12th episode of Living with PSC, Niall McKay discusses living donor liver transplants and PSC with John Crowley, whose brother was his living donor. Check out this episode!
Episode 11 – Monika Aldarondo: Motherhood and PSC
In the 11th episode of Living with PSC, Niall McKay discusses motherhood and PSC with Monika Aldarondo, a PSCer juggling parenthood and her rare disease. Check out this episode!
Episode 10 – Dr. Valentina Medici: Nutrition and PSC
In the tenth episode of Living with PSC, Niall McKay discusses nutritional guidance for PSC patients, with Dr. Valentina Medici, Associate Professor, University of California Davis. Check out this episode!
Episode 9 – Dr. Konstantinos Lazaridis: The Interaction Between Genetics and Environmental Exposures in PSC
In the ninth episode of Living with PSC, Niall McKay discusses the interaction between genetics and environmental exposures in PSC, with Dr. Konstantinos Lazaridis from Mayo Clinic Rochester. Dr. Lazaridis has received multiple PSC Partners research grants. Check out this episode!
Episode 8 – Dr. Heather Francis: Impact of URSO on PSC
In the eighth episode of Living with PSC, Niall McKay discusses the influence of the medication Ursodiol (aka URSO and UDCA) on PSC, including the impact of combining it with antihistamines, with Dr. Heather Francis, PhD, associate professor at the Texas A & M College of Medicine and recipient of a PSC Partners research grant. Check out this episode!
Episode 7 – Dr. Julie Heimbach: Liver Transplantation and PSC
In the seventh episode of Living with PSC, Niall discusses liver transplantation and PSC with Dr. Julie Heimbach, transplant surgeon and surgical director of liver transplantation at Mayo Clinic in Rochester, MN. Check out this episode!
Episode 6 – Trish Stoltzfus: The New ICD-10-CM Code for PSC
In the sixth episode of Living with PSC, Niall McKay interviews Trish Stoltzfus, professional medical coder and mother of a PSC patient, about the new ICD-10 code for primary sclerosing cholangitis (K83.01). Check out this episode!
Episode 5 – Dr. Cyriel Ponsioen: Fecal Microbiota Transplantation
In the fifth episode of Living with PSC, Niall McKay interviews Dr. Cyriel Ponsioen about Fecal Microbiota Transplantation (FMT). Dr. Ponsioen is a senior staff member at the Department of Gastroenterology & Hepatology at the Academic Medical Center in Amsterdam, and is a member of PSC Partners’ Scientific/Medical Advisory Committee. Check out this episode!
Episode 4 – A Conversation with Dr. Gideon Hirschfield
In the fourth episode of Living with PSC, Niall McKay interviews Dr. Gideon Hirschfield about a variety of topics related to PSC. Dr. Hirschfield is a member of PSC Partners’ Scientific/Medical Advisory Committee. Check out this episode!
Episode 3 – Dr. Scott Bea: Living with the Uncertainty of PSC
In the third episode of Living with PSC, Niall McKay interviews Dr. Scott Bea about the uncertainty of living with PSC. Dr. Bea is a Clinical Psychologist at the Cleveland Clinic. Check out this episode!
Episode 2 – Dr. Chris Bowlus: Diet & Emerging Trends
In the second episode of the Living with PSC podcast, Niall McKay interviews Dr. Chris Bowlus about diet and some of the emerging treatments for PSC. Dr. Bowlus is a Professor and Division Chief of Gastroenterology and Hepatology at the University of California, Davis, and was co-host of our 2018 Conference in Sacramento. He is also co-chair of PSC Partners’ Scientific/Medical Advisory Committee and scientific head of the PSC Partners Registry. Check out this episode!
Episode 1: Ricky Safer: A Patient’s Perspective
In Episode 1, Niall speaks with Ricky Safer, Founder and CEO of PSC Partners Seeking a Cure. Check out this episode!
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