I am not done fighting for myself or for other people with this eye condition. I want to be someone who is involved in a community and I will listen to other people like me who need a shoulder...
— Scoelicolor

It's about being seen.

All too often, those of us who suffer from chronic dry eye do not feel seen. Trying to communicate what chronic dry eye is like can feel futile – whether in conversation with loved ones or co-workers or, frustratingly, during an appointment with our eye doctors. There is a conglomeration of factors that conspire to make dry eye an isolating experience for us – some, of course, overlapping with the experiences of other invisible chronic diseases, but others that are specific to eye diseases or specific to dry eye itself. In fact, one of the worst barriers to understanding is the very name of the disease. "Dry eye" is an inaccurate, trivializing misnomer that inhibits rather than assists us in communicating what is wrong and how seriously our lives are affected.

So, we congregate online, forming communities in Facebook groups and forums where we can connect with others who share our experiences, who "get" it. We trade tips on home remedies, we seek out recommendations of specialists, we sympathize with each other in the various challenges we face at home, at work, at school, driving, reading, using a computer, attending special events, traveling, or trying to just get a good night's sleep.

But even in our communities, we remain, collectively, unseen. To our loved ones, our experiences often remain, a mystery . To our eye care professionals, it may sometimes seem as though we walk in the door as a pair of disembodied eyeballs with a low tear film break-up time, high osmolarity and some blocked glands. And to the industry, we feel like a demographic and a potential profit center. But the reality of our experiences remains invisible.

That's why we saw a need for Our Dry Eye Stories. 

Read about our vision for the project here

Ten years have passed since I awoke from surgery to facial paralysis and dry eye...It is expensive and requires planning, but does not keep me from doing just about anything I want. I have been zip-lining and white water rafting in Costa Rica, hiking in England, and am going on safari in Tanzania next February.
— Sara

who we are

 
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Rebecca Petris

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Aidan Moore

 

Aidan Moore is a third-year history major at Pomona College from Poulsbo, Washington with an interest in abolition, social justice, and revolutionary history. The visionary for this project, he sees oral history as a powerful way to counter institutionalized medical narratives with subjectivity and lived experience. He designs and maintains this site along with editing and receiving submissions. Currently, he is the interim customer service representative at the Dry Eye Company. 

Aidan has been working at the Dry Eye Company since 2016. Recently, as time has permitted, he and Rebecca have explored new patient advocacy futures with an emphasis on empowering and bringing together patients. 

Rebecca Petris, founder/owner of The Dry Eye Company, has been advocating and writing for dry eye patients ever since she developed dry eye and eye pain from LASIK eye surgery in 2001. She runs DryEyeZoneDryEyeTalkDryEyeShop, and now DryEyeStories, along with a weekly newsletter called KeratoScoop. She also runs Facebook groups for dry eye patients and users of scleral lenses or PROSE devices. In recent years, she's been engaging more actively with how eyecare professionals relate to dry eye, by representing patients in efforts such as TFOS DEWS II (a major international medical consensus project) and participating in research projects that aim at a better understanding o dry eye patients' needs.

 

support this project

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