11:15 - 11:20 amSaturday, September 28
Plenary Hall
Patient-Caregiver Relationships: A call for mutual support
Plenary Hall
Patient-Caregiver Relationships: A call for mutual support
CEO/Chairman & Founder, FMD Chat
In an ignite talk, the participant is given five minutes to speak about their ideas and personal or professional passions, to "ignite" the audience on a subject, i.e. to generate awareness and to stimulate... Read more

Description

In an ignite talk, the participant is given five minutes to speak about their ideas and personal or professional passions, to "ignite" the audience on a subject, i.e. to generate awareness and to stimulate thought and action on the subjects presented.

About the speaker:

Since receiving my diagnosis of a rare type of vascular disease—intimal fibromuscular dysplasia—I have plunged headlong into social media based advocacy. Social media affords rare disease patients like me an opportunity to connect with other patients around the world and make friends who understand, often better than our own families, what it is like to live with our disease.

I write because writing is the most efficient and effective way to reach into my soul, grab the slimy bits, pull them out, and put them on display. Why I want to put them on display is another question altogether. At times, I am lucky—what I pull out from my soul is a rough nugget of glimmering joy or a jagged ember of passion. Yes, these too must be extricated and catalogued, lest they take up too much room in an already full heart. By writing and sharing, I form tiny exhibits in a personal museum. The only admission charge for others is time and willingness to read. For myself, the cost is much greater, but so is the reward. Once, I was told that I helped motivate someone to become an organ donor. One organ donor can save up to eight lives. That person’s decision is real. The benefit is real. With myself as an organ donor, that makes sixteen lives. What a profound ability, to be able to give the gift of life.

Giving a sense of hope, solace, reprieve and comfort is why I write about health. I write about my own health because I am nobody. In being nobody, I am everybody. If I have survived, carried on, pushed through, and moved forward, so can everyone else—including you. This connection is why I founded FMD Chat, which provides peer-to-peer support for those affected by fibromuscular dysplasia. My advocacy is not limited to the rare disease community. I am active in healthcare and social media communities for stroke patients, chronic illness patients, advance planning and end-of-life care, as well as design thinking, healthcare innovation, patient engagement, and participatory medicine.

Medicine X is, as its name implies, a crossroad of ideas—one of those ideas being including patients in medical conferences. Bringing patient voices into the discussion helps break the curse of knowledge that diminishes the ability of those entrenched in the medical field to think about health care from a less informed perspective and pushes us all to move beyond the functional fixedness that marks so much of the current healthcare system. My own involvement in Medicine X is focused on adding to and learning from the collective creative idea pool, so that next year we may all find ourselves at an entirely new and exciting crossroads.

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.

 

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