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Participants at Mind Body Workshop
02 AUGUST 2019

Mindfulness-Based Stress Reduction Training Hosted by ALF Patient Advisory Committee and PBC Foundation

The American Liver Foundation is always looking for an opportunity to present innovative new solutions to the challenges of living with liver disease like primary biliary cholangitis (PBC). We seized such an opportunity last month when we collaborated with the Edinburg-based PBC Foundation to present two PBC Mind Body Workshops which took place in New York City on June 21st and on June 24th in Cleveland, Ohio. They were led by Robert Mitchell-Thain, Head of Education and Development at the PBC Foundation.

After these workshops, we held a train-the-trainer session in each city for four trainers at each, ALF staff and the PBC cohort of ALF’s National Patient Advisory Committee. These trainers will go back to their areas and conduct the workshops themselves to reach people across the country.

What do we hope to accomplish?

Jess Schnur, a member of the PBC cohort of ALF’s National Patient Advisory Committee, attended a workshop and learned to be a presenter herself. She hit the nail on the head when she said, “I appreciate the American Liver Foundation partnering with the PBC Foundation to bring a mindfulness program to PBC patients. Too often we get caught up in the numbers and medications and forget to take care of our mind, body and spirit. This workshop has given me many tools to handle the stressors that accompany a chronic illness and to not feel guilty for taking care of myself.”

About half of all primary biliary cholangitis (PBC) patients in the United States today experience dry eyes and mouth, chronic fatigue and/or extremely itchy skin (pruritis). Most often, they are directed by their physicians to try over the counter remedies such as antihistamines and artificial tears, or to rest and exercise to relieve these symptoms. Unfortunately, these methods, while safe, are limited in scope – and often in their effectiveness as well.

At the American Liver Foundation, we are excited about a current study at Yale New Haven Hospital that is seeing positive results in the use of mindfulness-based stress reduction (MBSR) for the treatment of fatigue in PBC patients. We are also enthusiastic about the qualitative results that the PBC Foundation is having with their mind-body connection workshops that aim to improve patients’ emotional intelligence, self-awareness, and psychological self-management.

These workshops guide PBC patients and their caregivers in how to use the power of the mind to cope with and manage disease symptoms. During each session, attendees are informed about Japanese methods such as ikigai (a concept that means “reason for being” and aims to motivate people to pursue their passions) and kaizen (also known as continuous improvement, a practice by which the systematic accomplishment of small, incremental changes in processes improve efficiency and quality long-term). Additionally, workshop participants are educated in Western approaches including biofeedback, cognitive behavioral therapy, and muscle relaxation. Each session begins with an overview of the various techniques, then delves deeper into the strategies that are most appropriate to offset or neutralize the most pressing challenges of those in attendance.

Tom Nealon
President & CEO
American Liver Foundation

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