9:35 - 10:20 amSunday, September 27
Plenary Hall
Illness & intimacy: How peer-to-peer conversations are identifying and filling gaps in whole-person health
Plenary Hall
Illness & intimacy: How peer-to-peer conversations are identifying and filling gaps in whole-person health
Medicine X Executive Board Member
Co-founder, Eliza Corporation
M.P.H., Tulane University
Medicine X ePatient Scholar
Just as doctors receive little training as to how to talk to patients about death and thus avoid the conversation to patients’ and caregivers’ detriment, there exists a major gap in doctors’ willingness... Read more

Description

Just as doctors receive little training as to how to talk to patients about death and thus avoid the conversation to patients’ and caregivers’ detriment, there exists a major gap in doctors’ willingness and ability to talk with patients and caregivers about intimacy and illness. Reclaiming intimacy after an acute medical event is regarded much the same as resuming any physical activity such as riding a bike, gardening or climbing stairs. These mundane tasks do not carry the same weight—they do not require intimacy’s physical and emotional exposure. They do not carry the burden of a body changed—a body that surgery has scarred; a body that healing has fatigued physically, mentally and emotionally. These iFor some patients there arises a complex sense of fear. In their struggle to recover and accept what has changed, patients face the reality that their significant others may not be able to cope. And indeed caregivers—often tasked with needed but intensely personal chores such as helping a patient bathe, bandaging wounds and preparing meals—may struggle with the responsibility their loved one comes to represent. 

In “Illness & Intimacy: How Peer-to-Peer Conversations Are Identifying and Filling Gaps in Whole-Person Health” a panel of patients, providers and researchers come together for a provocative discussion based on personal experiences and data to be collected through partnerships with online health communities. Questions the panel will explore will include: does the drive for sexual intimacy suffer when one person in a relationship becomes greatly dependent on his or her partner for basic needs; can love truly conquer the depression often associated with cardiac surgery; will a marriage survive when one partner becomes seriously disabled; how does a decline in physical intimacy impact healing; what successes and failures have couples experienced in trying to maintain or re-establish intimacy after an acute illness or throughout a chronic illness?

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.

Alexandra Drane is a co-founder, chief visionary officer and chair of the board at Eliza Corporation, the pioneer and recognized leader in Health Engagement Management.  Alexandra also co-founded EngageWithGrace.org and SeduceHealth.org.

Alexandra has proven herself as a visionary, whose ideas on using data and technology to engage people in their health, happiness and productivity have been adopted by the nation’s top healthcare organizations.  She sits on the Board of Trustees for Beth Israel Deaconess Medical Center, TEDMED Board of Advisors, Harvard Executive Sleep Council, and the Board of Directors and Operations Committee of the Coalition to Transform Advanced Care (C-TAC).

 

I am a 31 year old medical student and ex-high school teacher. I assisted in the development and founding of a high school in New Orleans, Louisiana called "Sci Academy", which has since grown into a successful charter school network that specializes in sending financially disadvantaged and underrepresented minority students to college.  As a 2005 Teach for America corps member in New Orleans, my home was flooded so teaching was delayed. In the wake of Katrina I was asked to manage a disaster recovery center for FEMA. From that experience I learned about the importance of cultural competency in data acquisition, warehousing, and analysis. Other life experiences include travel to Europe, India, Asia, the Middle East, and South America. Much of this travel is centered around mountaineering, which is my favorite sport and hobby. My most significant peak thus far is probably Denali in Alaska. I am a dual citizen of the United States and Canada and I've lived in 7 states, but my 'home' is New Orleans and that will probably never change, wherever I end up living. 

I am a family medicine trained physician who works as a Hospitalist in Anchorage Alaska with the Alaska Hospitalist Group. I was diagnosed with AML in 2013 and underwent treatment including a stem cell transplant. I was born and raised in Colorado where I was a avid Nordic ski racer, soccer player and mountain biker through college before going into medicine. I continue to be very active despite my cancer. I have two wonderful little boys 3 and 6 who were the reason I started writing. My wife is a physical therapist who has not only pushed me through my cancer but been my greatest friend in life.

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