Living With PSC

Living With PSC

By PSC Partners Seeking a CureMedicineHealth & Fitness
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Living With PSC episodes

  • Ricky and Audra Speak about the Exciting New Treatments for PSC
    In this episode, Niall speaks with Ricky Safer and Audra Flemming from PSC Partners about a remarkable moment for the PSC community: Ricky's recognition by AASLD, growing research momentum, and the power of patient-led advocacy. They discuss new developments in PSC and cholangiocarcinoma blood tests, the work of the PSC Partners International Collaborative Research Network, and why patient voices are becoming central to research and clinical trial design. Audra and Ricky also share news about the PSC Partners Conference taking place this November in Denver, in partnership with AASLD. Niall admits he kept saying "wow" during the conversation, because there was so much hopeful news: international collaboration, patient-led research, progress in symptom-focused drug development, and a community that continues to shape the future of PSC care. In This Episode
    • Ricky's AASLD award and what it means for the PSC community
    • New blood-test developments for PSC and cholangiocarcinoma
    • The PSC Partners International Collaborative Research Network
    • Patient-led research and the importance of lived experience
    • The November PSC Partners Conference in Denver with AASLD
    • Hopeful developments in PSC symptom treatment
    Links PSC Partners: https://pscpartners.org

    46 min
  • Harriet Medeley talks about Outpatient her new play about PSC

    Niall McKay talks to Harriet Medeley about her diagnosis of Primary Sclerosing Cholangitis (PSC) and how it inspired her to write Outpatient, an award-winning comedy play which opened in London this month. They discuss how her diagnosis, her life as an artist and mother and turning a life changing disease into art and comedy.

    28 min
  • The link between mental wellbeing and physical recovery after liver transplant.

    Host Niall McKay speaks with Dr. Sharon Millen, a health psychologist at Queen's University Hospital, Belfast in Northern Ireland. Dr. Millen, a two-time liver transplant recipient, completed her PhD on psychological well-being in liver transplant patients. Her research found a significant link between physical recovery and mental well-being. Niall and Dr. Millen also share their personal experiences with liver transplant, discussing the psychological impact on patients and emphasizing the importance of mental preparation, social support, and counseling. They highlight the challenges faced both before and after transplant, including social isolation, financial difficulties, and post-operative complications.

    32 min
  • 2024 PSC Partners Annual Conference, Cutting-Edge PSC Research, and the Search for a Cause: A Conversation with Dr. Tom Karlsen

    In episode 45 of the Living with PSC Podcast, Host Niall McKay talks with Tom Karlsen, MD, PhD, Co-Chair of the 2024 PSC Partners 20th Anniversary Annual Conference, and Clinical Specialist in Internal Medicine and Gastroenterology, Oslo University Hospital, Norway.

    "I've worked on PSC for more than 20 years, and that aligns nicely with the 20-year anniversary of the Conference, because I've seen PSC Partners throughout this entire career."

    Dr. Karlsen has partnered with the PSC Partners' team to create a dynamic agenda for the Conference. "I am fortunate to be co-chairing this meeting together with PSC Partners," says Dr. Karlsen. "(The Conference) is a mixture of basic knowledge and the research agenda as it currently stands," adding that cutting-edge research results are also on the agenda. "This is a big honor for me."

    The conversation also covers the gut microbiome, the benefits of slowing PSC progression, and the search for a cause. "I think to achieve a full-stop in PSC development, you need to know the cause," he says. "There's alot of activity in this space for the first time in many, many years. So, it will be an exciting 3-5 years from now."

    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!

    42 min
  • Early Detection of Cholangiocarcinoma: A Conversation with Dr. Jesse Kirkpatrick

    PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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!

    In episode 44 of the Living with PSC Podcast, Host Niall McKay talks with Jesse Kirkpatrick, Ph.D., a third-year Harvard University medical student, researcher at MIT, PSC Partners board member, and family member of a person with PSC. They discuss Dr. Kirkpatrick's research on early detection of Cholangiocarcinoma, a rare cancer for which people with PSC are susceptible. It is often difficult to treat in our population, because Cholangiocarcinoma is typically detected late in people with PSC. Kirkpatrick and others are working to develop better diagnostic and screening tests for bile duct cancers to enable earlier detection and better outcomes for patients. In 2023, he was the winner of the American Medical Association Research Challenge for his work in this area.
    33 min
  • In-Depth Look Inside the 2023 PSC Partners Conference: A Conversation with Medical Science Liaison Joanne Hatchett

    PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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!

    In episode 43 of the Living with PSC Podcast, Host Niall McKay talks with Joanne Hatchett, PSC Caregiver and Medical Science Liaison for PSC Partners Seeking a Cure, about the 2023 PSC Partners Annual Conference held in June in Henderson, Nevada. "I just thought the Conference was the very best thing that has happened in a very long time," said Hatchett. "We found so much synergy in people being together." This podcast discussion also includes information for newcomers, the importance of Conference peer group meetings, the value of networking between researchers, clinicians, patients, and caregivers, the tremendous educational and social opportunities offered, and much more.
    21 min
  • Rejection and PSC Recurrence After Liver Transplant: A Conversation with Dr. David Goldberg

    PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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!

    In episode 42 of the Living with PSC Podcast, Host Niall McKay talks with Dr. David Goldberg, Transplant Hepatologist and Associate Professor of Medicine in the Division of Digestive Health and Liver Disease at the University of Miami Miller School of Medicine. The two discuss post-transplant organ rejection and PSC recurrence after a liver transplant, which happens around 30 percent of the time to post-transplant PSC patients.
    32 min
  • Meet Dr. Stephen Rossi: A Conversation with the PSC Partners Chief Scientific Officer

    PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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!

    In episode 41 of the Living with PSC Podcast, Host Niall McKay talked with Dr. Stephen Rossi, Chief Scientific Officer for PSC Partners. In addition to Dr. Rossi's background, the two discussed PSC Partners research priorities and the progress of work being done worldwide to find treatments and a cure for PSC. "It's exciting to not only take what I've learned on the industry side and the clinical side, but actually work directly with the patient community," says Dr. Rossi. "There's alot of positive things evolving. I'd say, in the next five years, we're going to see a big breakthrough."
    38 min
  • Going Through a Liver Transplant: A Conversation Between a Husband & Wife

    PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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!

    In episode 40 of the Living with PSC Podcast, Host Niall McKay and his wife Marissa Aroy give us a rare peek behind the microphone as they discuss Niall's recent liver transplant. "We're doing a very unusual podcast today, because we're talking about myself," says Niall. "We don't really like to be on camera or in front of the microphone anymore, but we will make a special occasion of this for you to tell you what it was like for me to go and have a transplant."
    42 min
  • Post-Liver Transplant Recurrence of PSC: A Conversation with Dr. Palak Trivedi

    PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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!

    In episode 39 of the Living with PSC Podcast, Host Niall McKay has an in-depth conversation with Dr. Palak Trivedi, BSc (hons), MBBS, MRCP Gastro (UK), PhD, Associate Professor, and Honorary Consultant Hepatologist, University of Birmingham, UK. They talk about the recurrence of PSC in people who have received a liver transplant. They also discuss the differences between PSC and PBC, clinical trials searching for treatments and a cure, studies exploring the cause of PSC, and how IBD, particularly colitis, may reduce the risk of post-transplant recurrence.

    "In retrospective studies, our group and others around the world have found that people who have colitis and have had their large bowel removed (and have kept their stoma), lower their risk of developing recurrence of PSC," says Dr. Trivedi.
    41 min

About Living With PSC

From the publisher's feed

Primary sclerosing cholangitis (PSC) is a rare disease that affects the bile ducts inside and outside of the liver. There is no cure, and no treatments exist to slow the progression of PSC. This podcast, moderated by Niall McKay, 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!