about the survey
The “Dry Eye Disease and Me” survey was created by The Dry Eye Foundation and launched on June 29, 2019. It will be available to participants indefinitely on this website, both to participate and to view results.
The survey is organized into the following sections:
My personal dry eye profile
Onset and symptoms
Impact on quality of life
Diagnoses, causes, context, and clues
My dry eye problem-solving history
Remedies and treatments: What I’ve tried, what helps, what doesn’t
Experiences with eye doctors for dry eye
Financial impact of dry eye
Connecting the dots
The purpose of this survey is twofold:
As an education and advocacy tool, it is designed to help people struggling with dry eye to reflect on the nature of their experiences seeking help for dry eye and to inform and inspire them as they seek new strategies and solutions.
As a data collection tool, it is designed to help identify the needs and priorities of people struggling with dry eye, and to enable extensive analysis of their specific experiences with treatments, remedies, and the process of obtaining suitable medical care.
about the survey results
Summary data from this survey will be made continuously available to the public. We want this survey to provide a living, growing window into the experiences of people living with dry eye disease.
about the Dry Eye Foundation
Improving quality of life for people with dry eye disease by inspiring hope and providing help.
A new paradigm for dry eye care that identifies and addresses what we patients want and need - not just the measurable markers that clinicians, researchers, the industry and the FDA consider important.
To start conversations.
To foster communities that hear the full spectrum of voices and can collectively shepherd patients safely through the most physically, emotionally and financially challenging phases of dry eye disease.
To improve access to the information, resources and tools we all need to see more comfortably more of the time.
To prevent preventable dry eye by making information and stories known.
To help doctors, the industry and the FDA do a better job by effectively describing and communicating our needs.
TO RAISE THE BAR in eyecare and in advocacy.
background and acknowledgments
Creating “Dry Eye Disease and Me” was a six month long project. On-again, off-again, for most of that time, but the last month was intense. We could write a book about the evolution of the survey during those six months, what the process was like, how the nature of the project changed, and how we ourselves were changed in the process.
But of course, the entire six months were the tip of the iceberg. It began with 18 years of listening and observing people’s experiences with dry eye… from an insider perspective. Everyone has a different experience - and yet we all share elements of the same experience. What is that trend line that we never seem to stray too far from, and why? Why do we get stuck in these endless cycles of trying stuff and seeing doctors, without getting relief? What’s missing? We don’t want to dictate answers. We want to help each individual see what is missing in their situation, by pooling all our experiences and helping each other see and trust the reality of what we are struggling with.
Anyway, at some point, a survey was born that is designed to transform participants in small or big ways in the very act of completing the survey, even before we get the data and get a chance to start following out our big, Big, BIG visions for the data. I am excited to see where this will lead.
I owe a huge debt to Aidan Moore, my partner on this project. Every evolution, every major re-thinking, every twist in the road and re-engineering and change in the angle of approach, was made possible through constant conversations. Aidan is very young, does not have dry eye, and has a curiously different thought process. This combination of characteristics uniquely qualified him to help me continually turn the kaleidoscope and see our issues and problems though new lenses. His masterminding our new survey software was a huge help too, of course, leaving me free to focus entirely on content.
My love and deepest thanks to Lucille Kaplan, my dry eye muse from afar, who always knows and understands what I am driving at better than I do and before I do and can put it into words for me in breathtaking ways. It is an extraordinary gift in life to have someone who can embody and echo any of your thoughts and passions in such a way.
Heartfelt thanks to Rob Kahn. It wasn’t just the long, detailed, much needed feedback - it was the way I could hear his voice in my ear at so many points along the way. Rob and I have a deep sense of shared experiences with our eyes, and so much of my vision for this survey has been to open doors for others to find those connections and to know that they are not alone in what they are experiencing.
I’m so thankful to Amanda Mott, our newest board member, for leaping into the fray and helping when we were frantically trying to get this project to the finish line!
Then there are the many, many people who tested early versions of this survey. Your feedback and suggestions were all invaluable. I just appreciate every one of you so much.
The real inspiration for this survey project is everyone with dry eye or eye pain that I have ever spoken with since my own eye adventure started on July 20, 2001. You’ve shared your experiences and feelings and thoughts with me in thousands of conversations. Every story has its place in a growing composite.
For us to find better solutions, to help prevent some people from sinking into those very dark places and help others climb out sooner, and to help us all find our own unique path to relief, I am convinced we need a strong understanding both of the individuality of our dry eye stories and equally of the shared arc of a broader dry eye story.
That’s yet another angle on my vision for Dry Eye Disease and Me. So thank you, everyone who has ever been part of this story.