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Inherited Retinal Disease
Video

Patient Warrior: Living a fulfilled life, not defined by Stargardts Disease Part 1

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Watch Part 2 HERE

 

Bill Quain:

My name is Bill Quain. I’m a college professor, but I’m also a speaker and and author. And I kind of split my time up between those three things. I have Stargardts disease. I’ll be 70 years old in August, and I started losing my eyesight when I was 14.

The Diagnostic Journey

Bill Quain:

Stargardts disease is very much related to macular degeneration. I’m completely blind in the center of my eyes. I can see a very little bit in my peripheral vision here. I had to be positioned here. I do a lot of interviews, I do a lot of Zoom meetings, that sort of thing. And so I have to be very careful. My tendency is to look to the side a little bit where I have a little bit of vision left, so I try to look so that I don’t see anything, and then I kind of know I’m right on the spot there.

When I was diagnosed, 14, they told me, “Oh, don’t bother learning braille. And you’ll lose some vision here, but it won’t be bad.” And what happened was every year I lost a little bit of vision. So it was real dramatic at 14. I mean, it was a big switch at 14 because that’s when I lost the central part. But so every year it gets a little worse, which wasn’t so bad back when I still had a fair amount left peripherally. But over the years you lose a little bit of a lot, it’s not so bad. You lose a little bit of, a little bit kind of leverages and magnifies there. So that’s where I am now. I can get around a little bit. I used to walk with a white cane. Starting about four months ago I got a guide dog named Trudy, who’s just fantastic. I got her from Guiding Eyes for the Blind. She’s a black lab. I use her to move around now, and it’s made life a lot easier.

I know people watching this video are going to be concerned. Whether you’re a medical professional, whether you’re a patient, or you’re an advocate, whoever you happen to be. That diagnosis, my mother was diagnosed with ovarian cancer when she was 52 and she survived 23 years after the diagnosis. And she wrote a book called Surviving Cancer. Now, I’ve never written… I mean, I’ve written a lot of books. I’ve never really written about my eyesight. But my mom used to say, “If you can survive the diagnosis when they tell you you have cancer, if you don’t have a heart attack, you have a chance.” I have a brother and a sister with Stargardt as well. My brother who got it first, he was two years younger than me. So he developed it when he was nine, so I was 11.

So from 11 or 14, I was aware of his situation. So when it happened to me, I kind of knew that I had the same thing, but I wasn’t prepared for the shock of the diagnosis. Even at 14, I had no idea what the ramifications would be, lifetime. My parents did, and that was pretty upsetting to them. But that diagnosis is pretty [inaudible 00:03:07]. With a diagnosis of anything major, you have a break from where you were 30 seconds before you heard the diagnosis to where you are after that. Because all of a sudden now you’re facing a whole new set of circumstances. So that diagnosis, for those of you who are either patients or working with patients, I got to tell you that’s a big deal. And the real weight of it doesn’t hit people for a while, or at least it didn’t hit me for a while. I was shocked, but I didn’t know the ramifications of it.

Regaining a Sense of Independence

Bill Quain:

Not being able to see it’s, first of all, it makes life more boring. You’re losing that sense that everybody else has, or most people have of a kind of wider world. That you become a lot more… I don’t want to say I’m introspective because that’s not my personality, but you spend a lot more time in your own head because you’re not stimulated by some of the other things that are out there. So that’s the tough part. Because I was 14, there’s nothing else bothering you at the age of 14. You’ve got so many things going on in your life that are so perplexing to you, now you throw in the fact that all of a sudden you can’t see. And remember, back then I didn’t look like I couldn’t see well, unless I was in a situation where I had difficulty to function. So it wasn’t something that you wear outwardly where people were immediately aware of it and maybe would change their behavior in some way forward.

But I’m glad about that. And I spent a lot of my life really trying not to look blind because I wanted to be accepted. I want to put people at ease. I wanted to be not defined by a disability. So that’s part of the loss of independence. That’s the biggest thing. Because at 14 years old, I expected I’d be getting a driver’s license in two years. And that was a really tough one, not getting a driver’s license. I wanted to get places. And so my whole life has been a real challenge to set up my life so that it would minimize the impact of my disability. And one of the most important things of that is my independence. That’s one of the reasons I went to a dog this late in life, was just to seize as much independence as I have.

In terms of patient advocacy and in terms of healthcare professionals understanding this, I run a lot. And so I’ve been a runner all my life. This coming year, in my 70th year, I’m scheduled to run two half-marathons. One in September and one in October. And so when I got this dog, I purposely got a dog that would run with me. That gives me independence. But I run on the boardwalk in Ocean City a lot, and it’s an unusual site. I wear a vest that says blind, I’m running with a dog. And I stand out a lot. And so a lot of people know me, and I like to talk to people. And so people always will often tell me, “Oh, my grandfather or my mother,” or whatever, “has macular degeneration.” And of course they have the adult version of it. And I always tell them, I said, “I can’t even imagine how difficult it is to get the diagnosis when you’re an adult that you have macular degeneration.”

And here’s why. I spent my whole life, I mean every circumstance of my life, setting myself up to live with the fact that I knew my eyesight was declining, and I knew… I’d already lost a big chunk of independence with not being able to drive. But I designed my life. I mean, I live my life by design. I really do. It’s mind-blowing to me. I can’t imagine how tough that is for people. Because your life wasn’t designed to live that way. Imagine having this kind of life change thrust upon you when everything else you did in life was designed to live as a sighted person.

Coping with the New Normal

Bill Quain:

And coping with my diagnosis. Man, I’ll tell you, I didn’t know how to handle when I was really younger and it took a little while to sink in. But here’s the thing about when you have a progressive disease, you’re coping with your diagnosis every day. One of my favorite sayings is stay ready and then you never have to get ready. And I think when you have a life-changing disease diagnosis, you got to just stay ready. I wake up every morning and the first things I’m thinking about are how am I going to overcome the challenges of today? And like I say, I design my life so that I’m giving myself the tools that I need. I treat my diagnosis as a daily diagnosis, because every new situation I get in, whatever it happens to be…

For example, I’m a college professor. The big thing with that is so much technology. We use so much technology in teaching today. Not to mention when, of course, all the schools got shut down with the pandemic. So I have a couple of graduate assistants. I’m coming up with, I’m scheduling things for them. I’m thinking ahead all the time, what situations do I see coming up and how do I get them ready and prepared to be my eyes for that day?

So this diagnosis, I want to encourage people, whether you’re a patient or whether you’re a healthcare provider or whoever you are, I want to encourage you to think of the diagnosis as not being a single event, because we can’t anticipate things we’re going to have happen to us. And I don’t mean another disease or something like that. I’m just talking about the everyday life things that come along that maybe were different than they were yesterday. So in living with a challenge like this, it’s a daily diagnosis. So that coping with diagnosis is stay ready so you never have to get ready, and then do that diagnosis every day and work with it.

 

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