Hi, I'm Rebecca Petris. I've been advocating and writing for dry eye patients ever since I developed dry eye and eye pain from LASIK eye surgery in 2001. My sites are DryEyeZone, DryEyeTalk, DryEyeShop, and now DryEyeStories, and I have a weekly newsletter called KeratoScoop. I also run Facebook groups for dry eye patients and users of scleral lenses or PROSE devices. In recent years, I've 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 of dry eye patients' needs.
I turned to Patreon because I wanted…
…to devote more of my time to writing, education, and advocacy, including speaking engagements
…while keeping my Dry Eye Zone websites advertising-free
…and keeping my consulting time free of charge
…and to provide a way for people who have benefitted from my work to give back.
It’s about connecting people with hope and help...
…by identifying and articulating dry eye patients’ needs and communicating them to an industry that is focused on its own agenda
…and educating and coaching patients as they learn to advocate for themselves
…and connecting patients with a supportive community.
…And making it financially sustainable.
The immediate impetus for starting a Patreon page was that my team wanted to crowdsource some funding for our new DryEyeStories website, which we’ve been working on in preparation for Dry Eye Awareness Month (July 2018). DryEyeStories is a project Aidan Moore and I conceived in order to offer an alternate narrative to counter the inevitable dry eye industry marketing bonanzas taking place during Dry Eye Awareness Month - and beyond. Please visit, read, and share your story!
But there is a broader context. I need a revenue stream that will allow me to continue to create content for dry eye awareness and education and also to engage in advocacy opportunities (such as speaking engagements), while staying independent (i.e. no industry funding). When you have a popular website, monetizing it through advertising is the expected, no-brainer approach, but I’ve never been able to stomach that option for us. The DryEyeZone website has always been advertising free and so long as I have anything to do with it, they always will be. Instead, historically, I’ve funded myself through the DryEyeShop, which I started back in 2005 for that purpose among others (that’s a whole story in itself, and a whole mission in itself - visit dry eye shop for more about that). But these days, the shop is, frankly, tapped out. It simply cannot afford to support me and my family unless I’m working full time in the shop itself.
Where will the money go?
Very simply, after the 5% that Patreon takes for offering this service, it will go to paying for the time I put into writing, education, patient consulting and advocacy work. My needs are pretty modest. If by some miracle I were to end up with more than I actually need, we will revisit and ask the community to weigh in on some options.
A bit of history… of the dry eye world and how we relate to it
I started The Dry Eye Company in 2005 to help people with dry eye through education and advocacy and building online communities like DryEyeTalk.com.
Back then, it was very difficult to get information, an accurate diagnosis, or any treatment options at all beyond drops and gels and ointments and, at most, plugs and Restasis. Misdiagnosis was common; being dismissed with variations on the theme of “You have dry eye; live with it; there’s nothing we can do” were extremely common. Things like a detailed diagnosis or advanced treatment options were simply not available.
Many things have improved in the dry eye world since then. The industry has ramped up hugely and is churning out products and treatments left and right. Doctors are slowly educating themselves about our needs. Dry eye clinics are the new vogue revenue generators in eyecare practices. The TFOS DEWS report, the profession’s first dry eye bible, was published in 2007, and played an important role in many subsequent changes. The updated report, TFOS DEWS II, was published in 2017 and has proved a fabulous resource.
But for us patients? Some of these things are helping some of us in some ways, for sure. But some of the recent advances also mean that we are swapping old problems for new problems, such as:
- How do we orient ourselves in an increasingly complex and noisy information stream?
- How do we wade past the hype of exciting new treatments to the actual clinical results and the ever elusive information on what kinds of patients benefit from a particular treatment?
- How do we help shift our eye doctor's attention from exciting new diagnostic and treatment options to us, our actual symptoms and our treatment goals?
- How do we benefit from rapidly changing information without increased anxiety?
- How do we understand and communicate our needs effectively?
- How do we access skilled but also compassionate care?
- How do we understand our doctor’s role in our complex needs?
- How do we cope with the depression cycles that come with chronic disease and are particularly acute in eye disease?