We interviewed David Epstein at our first annual Glaucoma Patient Summit in San Francisco, March 2019. He shares his struggles with glaucoma, and why he and his wife donate to Glaucoma Research Foundation, and our mission to find new treatments and a cure.
My name is David Epstein and I’m from Newport Beach, California. I was born with something called Axenfeld-Rieger syndrome or anomaly, which affects my eyes. I grew up in a small town, kind of middle-income and not much advanced medical care. So when I was first born they weren’t really sure if I could see or not. I’m pretty much blind in my left eye. I had doctors check me every year. And then in my early to mid-twenties my wife and I moved to Boston for me to go to graduate school, to go to business school. And I was diagnosed with glaucoma at that point and started getting treated pretty aggressively. So in my early to mid-twenties, and ever since.
It’s an interesting disease or complication or disability, whatever you want to call it, because it affects you and you live with it day to day, but nobody really knows you have it. I’m a pretty private person. I don’t really share my disease or my problem with other people. But when you do you, you come out and you tell people about it, people don’t really believe you I think a lot of times when you tell him that you have vision issues or vision impairment issues. You try to go through your day to day life normally.
But the disease really started to progress for me in my late forties, going to turn 50, and it’s been a real struggle since then. I only see out of one eye because I’m blind in my left eye, and my vision continues to deteriorate. And we’ve controlled the pressures very well, but even with controlled pressures, the disease continues to progress. And it’s a tough battle. It’s a day to day tough battle. And you try not to let it affect what you do on a day to day basis.
I’ve had a number of doctors. I had a doctor in Boston when I was first diagnosed. Thomas Richardson was a phenomenal physician. And he referred me to a doctor when we moved back to Southern California in the early 90s, Don Minkler. He was a very world-renowned glaucoma specialist. And he retired maybe five, seven, 10 years ago. We went looking for a new physician and we ended up with Jeffrey Goldberg as my new physician in Stanford University. And so we’ve been coming up to Northern California for my treatment. And with that, my wife got involved with GRF, Glaucoma Research Foundation. And whatever we can do to help find a cure, find new treatments, find new technologies, it’s something that we’re really passionate about.
What do you wish other people knew about glaucoma?
I think I talked about this a little bit before. It’s kind of an invisible disease. People don’t really know you have it. And so I think the more they can get to understand the disease and how it’s not one of these diseases you get cured from. It’s a constant battle. It lives with you day to day. I’m also a type one juvenile diabetic, so I have these two chronic diseases and you live with them every day. They don’t ever go away. And I think that’s the one thing that people probably need to understand more than anything. It’s always with you. It’s not like a broken arm that heals in six or eight weeks. It’s always with you and you always are dealing with it.
Why are events like the Glaucoma Patient Summit important?
This is a phenomenal event and my wife has had a lot to do with this. And I try to thank her every day for this. She’s gone to a number of more clinical meetings, which are more directed toward the physicians, the doctors, which are very important also, don’t get me wrong. But to help a patient and give them the tools they need to deal with losing their eyesight over time or having impairment of their eyesight over time and what’s available to them technology-wise and how to do your job, how they get around, if you can’t drive anymore. I mean, there’s a myriad of issues, and there’s no book on how to lose your vision. You’re scrambling every day to figure this out. So any way that GRF can help educate patients is a phenomenal thing. And I’m amazed at the turnout and I think it’s a great event and it’s super helpful, especially for someone like me.
Why do you support Glaucoma Research Foundation?
We’re looking for a treatment. We’re looking for new treatments. We’re looking for a cure someday. My hope is that, whether it’s myself or my family, or my children, or my children’s children, or anybody else out there in the world who doesn’t have to live with glaucoma, any amount of money we can give to help support that, preventing anybody to have to live with this disease, it’s well worth it. I don’t wish this on anybody. And if we can help solve this disease, anything we can do, we’re happy to help out.
Posted on April 21, 2020 — Reviewed April 4, 2022