PATIENT ADVOCACY VISION BOARD
The Patient Advocacy Vision Board works to show how the power of personal story and coming together as a community with your family and friends can make all the difference in the rare disease spectrum. Testimonials have been included to help share some of those stories and how together we are stronger.
“I would like to see them (medical communicators) become more knowledgeable in rare diseases and give it the same amount of importance as the more common world known diseases,” said Madaline Lesieur who has Hypereosinophilic Syndrome (HES).
“I wish there were movies where the actors have feeding tubes,” said K.E. Plunkett who has Eosinophilic Esophagitis (EOE) and has been on a feeding tube for most of his life.
“I would like to see a better representation of what it is like waiting to find out what your diagnosis is because you can’t treat a ‘maybe,'” said Sarah Weisberger who has been diagnosed with probable Eosinophilic Esophagitis (EOE).
“When looking back on this past year alone (2020-2021) It’s been a tough year. Jameson (her son) is Mr. Social Butterfly so being away from everyone really changed him. He went into a deep depression and Guliana (her daughter) got severe separation anxiety. I was forced to quit my job because they said my kids my problem basically. I feel like it’s something that was ignored initially. It was to late by the time people started talking about it. Jameson does therapy at a farm which has helped so much” said Kristina Andrews whose son is diagnosed with Eosinophil Esophagitis (EOE).
RESEARCH REPORT: “DEFINING NEW MEDIA…IN THE WORLD OF TECHNICAL COMMUNICATION”
“Defining New Media…in the world of Technical Communication” is a research report that was conducted in the Fall of 2019 of my graduate program. This special interest report looks specifically at medical documentation for patients and caregivers when using technology in the virtual space. It gathers information from a wide variety of sources to provide context and evidence.
In this paper I research the definition behind new media and how new media and technical communications comes together in the field of medical documentation (via the Internet). In my study we interview Executive Director for The American Partnership for Eosinophilic Disorders, Mary Jo Strobel and University of Massachusetts Dartmouth English professor, Katherine DeLuca. I chose to interview these two individuals because they have first-hand professional experience that shows multiple aspects to the field. The following paper explores theories given from theorists such as Douglass Eyman, Barry Thatcher, Alison Reynold and more. When selecting my articles, I made my choices based on what would enhance my paper and add to my argument. The overarching goal of this paper is to uncover a better understanding of new media and its important role in technical communications for medical writing. We want to explore the many definitions and portray how like rhetoric, there is not just one definition. Nor is new media just new media…we will learn that it is far more.
Keywords: New Media, Technical Communicator, Medical Documents, Cyberliteracy, Delivery, Community & Audience
PUBLICATIONS: “LUNA LUNG… MEETS HES”
“Luna Lung… Meets HES” was published in 2018. The true story takes the shape of a children’s book. A tale that calls all ages and children at heart to get ready to go on an adventure with the beloved character Luna Lung as she dives into her life story. “Luna Lung Meets HES,” is a tale that educates you about the chronic illness of Hypereosinophilic Syndrome. She teaches you how to come together as a community and unite as one to promote fundraising and how important it is to find a cure. This book in turn will motivate you to start your own fundraiser and how one little step can result in a whole act of kindness. “Luna Lung Meets HES,” is based on a true story of a mother’s journey through diagnosis and a daughters inspiration for a cure.
“LUNA LUNG…MEETS HES” THE REMIX
This personal story that was first produced in print back in 2018 has now been brought to life in the remix for 2021. In doing so the remix offers readers an interactive experience that includes animation, voice over, external links to further the conversation, and more.
DOCUMENT DESIGN: MEDICAL LABELING
The following lesson plan was developed to look at the pitfalls of medical labels document design. Through this lesson I educated students about the importance of labels in the administering of medication and the way in which they are designed. Medical labels that are poorly designed without keeping a user-centered design in mind (this being for patients and caregivers) can cause significant consequences. By incorporating and maintaining not only an industry standard but a well managed medical label design we can greatly reduce the issues posed by poorly designed labeling.