about

website

This website is hosted by The Dry Eye Foundation, a 501(c)(3) nonprofit organization founded in October 2018.

The site was first launched in 2019 as a portal for people participating in the Dry Eye Disease and Me survey. The survey closed in early 2021 and the site is now dedicated to displaying and commenting on the data and stories we collected.

“dry eye disease and me”

“Dry Eye Disease and Me” is a survey created by The Dry Eye Foundation as an exhaustive inventory of our community’s dry eye journey.

Status: On pause

The survey was launched in 2019 and ran for about a year and a half. We intend to re-open the survey to participation by the end of 2022.

participation

We received 480 completed surveys.

Content

The survey is organized into two main sections:

  1. My personal dry eye profile (onset and symptoms; impact on quality of life; diagnoses, causes, context and clues)

  2. 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)

It’s a long survey, with more than 600 line items, and many opportunities for participants to share more information freehand.

Purpose

The purpose of this survey is twofold: (1) As an education and advocacy tool, it was 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. (2) 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.

the story behind the survey

by Rebecca Petris

The 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 when I had LASIK 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 that continually growing and shifting composite that is our community’s story.

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, in order for us to find better solutions, to hopefully help prevent some people from sinking into those very dark places, to help others climb out sooner, and to help us all find our own unique path to relief.

Creating “Dry Eye Disease and Me” was a six month long adventure Aidan and I embarked on when the Dry Eye Foundation was first incorporated. 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.

Those six months were also the culmination of nearly two decades listening and reflecting on people’s experiences with dry eye - from the insider perspective, as one who is on this journey too. Everyone has a different experience. 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?

And so many more questions.

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.

Thus a survey was born that was designed not just to gather data, but to inform participants about their own journey, by probing and bringing features of their experience into focus that they may never have thought, spoken or written about before.

Some acknowledgments:

Aidan Moore was my invaluable partner on the survey and this was our first major project together. 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. At every stage, Aidan helped me continue to turn the kaleidoscope and see our issues and problems though new lenses. He also masterminded our new survey software, 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, at the time our newest board member, for leaping into the fray and helping back in 2019 when we were frantically trying to get the project over the finish line.

Many more people tested early versions of this survey. Your feedback and suggestions were all invaluable. I just appreciate every one of you so much.