About our community
Who DEF serves
Dry Eye Foundation was formed to help improve quality of life for people with dry eye - that is, with ocular surface diseases or ocular surface pain. Our community is generally people on the far end of the disease and symptom spectrum - people who have experienced severe impact to their daily lives.
Over time and as our organization matures, we will be increasingly working to raise awareness about prevention and early treatment for people who do not have severe dry eye. But our roots are with people having a hard time, and there’s where we focus most of our efforts.
Our community is diverse - from teenagers to nonagenarians, from supremely healthy and fit to people suffering from a host of chronic diseases, from sudden onset disease to a slow gradual decline, from a history of eye issues to no eye issues at all.
Our causes are diverse - from side effects of medical treatments to systemic diseases to to environmental and lifestyle factors to completely unexplained.
Here are some examples of the types of medical conditions experienced in our community:
Severe ocular effects of rare or uncommon systemic diseases, such as Stevens Johnson Syndrome, Graft v Host Disease, Sjögrens Syndrome.
Drug side effects. According to research, 22 of the top 100 best-selling systemic drugs in the US may cause dry eye.
Medically necessary surgery that affects the eyes directly or indirectly, such as cataract surgery, ptosis surgery, dacryocystorhinostomy (DCR), or acoustic neuroma removal.
Elective vision surgeries such as LASIK, PRK or SMILE, or cosmetic eyelid procedures.
Temporary or permanent damage to facial nerves resulting in incomplete eyelid closure.
Diseases of the oil glands in the eyelids.
Neuropathy: nerves that chronically misfire.
Completely unknown reasons. You’re fine, and then overnight, you’re just not. Some people never learn why this happened to them.
How our community is feeling
Isolated. Discouraged. Confused. Frustrated. Most of all, fearful.
We struggle, for months or years, to find skilled doctors, to get a diagnosis we’re confident of, and most of all to get treatments that help us regain the basic daily functions we need.
We worry. A lot.
We worry about our work productivity, our ability to continue working or return to work.
We worry about the future, especially if this truly is the “chronic and progressive” disease it’s often described as.
We worry about money for all the treatments that insurance doesn’t cover.
We worry about the toll this is taking on our relationships.
Sometimes a sensation of mounting losses grows, with no hope in sight.. Depression, anxiety, even suicidal ideation are a shockingly routine part of the ocular surface pain experience.
DEF’s priorities
The profound emotional impact of ocular surface disease and ocular surface pain, and the reasons for it, are why our top priority at the Dry Eye Foundation has always been ensuring people have the support lifeline they need when they are struggling.
We work hard to meet people where they are and to make sure support is accessible for everyone.
How can something as trivial-sounding as “dry eye” be this bad?
The life impact of dry eye is often bewildering to those who experience it, and incomprehensible to those who don’t.
That’s why we wanted to help our community tell its story.
“Dry Eye Disease and Me” is an in-depth survey we ran soon after incorporating the Foundation.
Browse the results to learn more about our community’s experiences.
A video about eye pain
This video was prepared on request for an ophthalmology conference, and we have been sharing it more broadly with the community to help people understand the life impact of ocular surface pain.