1:30 - 2:15 pmSunday, September 18
LK 101
Ah-Ha! moments in mental health and chronic disease management
LK 101
Ah-Ha! moments in mental health and chronic disease management
Medicine X ePatient Scholar
Medicine X Executive Board Member
ePatient Scholar
Medicine X ePatient Delegate
ePatient Scholar 2015; junior member, ePatient advisory panel 2016
Mental health and chronic disease management are often interwoven topics in science. But what about the human side of the story? Whether or not individuals meet the diagnostic criteria for mental diagnoses,... Read more

Description

Mental health and chronic disease management are often interwoven topics in science. But what about the human side of the story? Whether or not individuals meet the diagnostic criteria for mental diagnoses, we all long for optimal mental and physical health to attain good quality of life.

How do we put a personal face to the feelings that hypoglycemia, or chronic pain, or other physical health struggles invoke in terms of our emotions? What moments have changed the way we think about mental health and chronic disease, and how can we encourage these same poignant healthcare interactions in the lives of others?

This panel will explore just how vital this conversation is in chronic disease and mental health management by featuring multifaceted patient, caregiver, and mental health advocate perspectives. In order to facilitate this conversation for all patients, we must raise the topic from the very source: ePatients themselves. Therefore, this panel is ePatient-centric in its selection of presenters. We will identify crucial learning moments in understanding our own mental health, while promoting a transparent discussion that remains much-needed in humanizing healthcare.

The panel will include ePatients Alan Brewington, a MedX scholar and MedX ePatient advisor who advocates for the arthritis and chronic pain communities; Kristin Coppens, a MedX ePatient advisory panel member, communications professional, and chronic disease advocate; Danielle Edges, a MedX scholar and pediatric healthcare advocate actively involved in the heterotaxy syndrome, congenital heart defect, and Abernethy malformation patient communities, among others; Allison Ferlito, M.S., a MedX scholar, MedX ePatient advisory panel member, and diabetes advocate; and Mark Freeman, a MedX scholar, MedX ePatient advisor, and cofounder of online mental health community Everybody has a Brain.

Ah-Ha! moments relevant to the following topics will be discussed:

  • Why the words we use matter so much
  • Barriers to care
  • Continuum of “before, during, and after” mental health becomes a focus of care management; early intervention in normalizing this conversation
  • Caregiver resources and how to talk to children/teens about difficult health topics
  • Managing multiple diagnoses
  • Curtailing advocacy “burnout”

The panel would also be open to answering audience questions, time-permitting.

Sarah Kucharski, or AfternoonNapper, blogs as a health advocate fostering the patient voice in medicine. Special interests include the patient experience in healthcare settings, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, health literacy, advance planning and end-of-life issues. She is CEO/Chairman and Founder of FMD Chat, a nonprofit organization supporting those around the world affected by a rare vascular disease. As FMD Chat’s leader, she oversees the organization's consistent achievement of its mission and financial objectives; fundraising; publicity and media relations; domestic and international partnerships; volunteer recruitment and development. She also serves on the ePatient Advisory Board (2012, 2013) for Stanford University's Medicine X conference.

Speaking engagements have focused on the role ePatients are playing in healthcare at the Doctors 2.0 & You healthcare and social media conference in Paris, France; and to med school students at both Stanford and UC Irvine regarding the ePatient experience. Additional conference participation includes HealthCamp DC; Partnership With Patients; HealthCamp Kansas City; ScienceOnline 2013, and Rare Disease Day at the National Institutes of Health. Her work has been recognized with Health Advocate Award nominations from Wego Health, state newspaper and international blog write ups, a Rare Disease Legislative Advocates scholarship to participate in Congressional lobbying on behalf of the rare disease community, and a scholarship to Medicine 2.0 at Stanford University.

Individually she is a member of the Society for Participatory Medicine, National Organization for Rare Disorders, Rare Disease UK, Cleveland Clinic Patient Advisory Panel, and Regina Holliday's Walking Gallery of Healthcare. FMD Chat is a partner organization of the N.C. Center for Nonprofits, Global Genes, EURORDIS, and Rare Disease UK.

AfternoonNapper's day-job is as an award-winning writer and editor of a nationally-published, regional lifestyle magazine covering Western North Carolina, East Tennessee, North Georgia, and Southwest Virginia. She is responsible for the magazine's overall editorial concept and content in addition to business operations including freelancer relations, marketing, sponsorships, and social media.

As her moniker would imply, AfternoonNapper enjoys ruminating from a prone position and napping—mostly in the afternoon, but any time will do.

I struggled with OCD, depression and related anxiety and addiction issues for more than a decade before finding my way to recovery. I now focus on helping others find their own path to mental health and wellbeing. I co-founded the Everybody has a Brain online mental health community, which uses art, video, and personal stories to promote a proactive, preventative approach to maintaining and improving mental health. I also write books, create how-to videos that support people through the process of recovery, and facilitate mindfulness training workshops. I have worked as a design thinking workshop facilitator for over five years and much of the tools I develop for making complex health changes are adapted from the same tools that help organizations make complex changes.  

I’m passionate about shifting the prevailing view of mental health care from an illness-first approach, to a health-first approach that recognizes everybody has a brain, so everybody has varying levels of mental health that are affected by the decisions we make every day.

Stanford MedicineX epatient delegate 2015. Mom to two daughters, Alexandra and Aria, ages 7 and 6. Alexandra was born with Heterotaxy Syndrome, Complex Congenital Heart Defects, and Abernethy Malformation. Alexandra has undergone 5 heart surgeries and an abdominal surgery all before the age of 4. Passionate about advocacy for medically complex children, and the parents/caregivers that care for these children. Tweets, blogs, Facebook's her story daily. Not only is her story about her medically complex daughter, it is also about her journey as a Mother and how she deals with the ins and outs of the medical system. 

I run verylightnosugar.com, a website dedicated to diabetes advocacy and healthcare engagement.  My fulltime job involves working with Veterans.  I recently completed my Master of Science in healthcare administration and management, and I look forward to all of the good things to come in healthcare!
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