March 11, 2024 • 23 mins
Clearly KC host Dr. Melissa Barnett OD welcomes colleague Dr. Jason Marsack PhD from the University of Houston, where his lab is engaged in correcting higher order aberrations. Dr. Marsack shared his story of a keratoconus diagnosis while a college student and his vow to apply his engineering skills to improving the vision of others. He and Dr. Barnett discuss isolation, empathy and the “KC Personality” which he observes may be the search for answers and frustration with the technology gap that many patients experience. He is encouraged by advances in KC treatments and the dedication of scientists and practitioners to improving the detection and management of these individuals.
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(00:05):
Welcome to the Clearly KC by the National Keratoconus Foundation, featuring information about life with keratoconus.
I'm your host, Dr.
Melissa Barnett.
.999Today, I'm really excited to welcome Jason Marzak, who's an associate professor at the University of Houston College of Optometry, where his research over the last 20 years has focused on designing corrections for eyes of individuals with keratoconus.
(00:33):
Jason has a somewhat unique perspective as a researcher in this area because he himself has keratoconus.
Welcome, Jason.
Thank you very much.
I'm very excited to be here.
.999and really appreciate the work that y'all do with this podcast and all your other endeavors related to care to come in.
.999So thank you very much.
(00:54):
Well, thank you so much for joining us on the Clearly KC podcast.
We've had the great opportunity to work together over the years.
Thank you for contributing to our book, Contemporary Scleral Lenses Theory and Application. 14 00:01:08,944.999 --> 00:01:14,885 Share with us a little bit about your journey of keratoconus from diagnosis until now.
(01:16):
Sure.
Maybe at the very beginning, I'll just give a couple of disclosures because they will hit into my, story here.
I'm funded by the National Eye Institute and the American Optometric Association.
.999I also have a commercial relationships with companies, Wavefront Dynamics. 19 00:01:30,884.999 --> 00:01:33,185 We're developing a partnership with Cooper Vision as well.
And we have some patents here at UH related to this technology.
(01:37):
But today I'm just speaking as myself.
I'm not representing any of these people or the university.
And like you said, we're talk a little bit about my story. 24 00:01:44,594.999 --> 00:01:46,114.998 Actually I called my parents this morning. 25 00:01:46,164.999 --> 00:01:47,724.998 I wanted to make sure and get this correct. 26 00:01:47,794.999 --> 00:01:50,774.999 So I called my parents and they confirmed the timeline a little bit.
So I was diagnosed in 1996 around there when I was a college student.
And this is kind of the classic story of Keratoconus, it hit me at a pivotal time, where I was trying to figure out what I was going to do next, what I was going to do for a career, you know, I was probably, What you might consider the typical difficult patient with keratoconus. 29 00:02:10,360.1 --> 00:02:22,600.099 I was searching for answers I was seeking relief from something and at the time I guess I didn't really know what I was seeking But I definitely saw many doctors. 30 00:02:23,640.098 --> 00:02:27,380.098 I was not satisfied if that maybe rings a bell from you for clinically. 31 00:02:27,920.098 --> 00:02:34,160.099 And I remember I went to see a doctor in Austin when I was, doing a master's degree at UT, and his name was, Merle Jackman. 32 00:02:34,700.099 --> 00:02:39,650.098 And that visit, when I went to see him, it completely changed the trajectory. 33 00:02:40,35.099 --> 00:02:52,955.099 Of my career in my life, I thought, what he was able to do, in terms of providing me the correction and I think he really more than anyone to that time, just kind of listened to what I was saying, and he was willing to try some things that were maybe not what. 34 00:02:53,305.099 --> 00:02:54,855.099 Would be typical for Keratoconus. 35 00:02:54,855.099 --> 00:02:57,95.099 He actually fit me in pure vision, Tauric lenses. 36 00:02:57,925.099 --> 00:03:07,455.099 And I just have this recollection that the things I was searching for, it was like I had found them, you know, his solution filled this gap and I remember very distinctly. 37 00:03:08,330.099 --> 00:03:15,420.099 Days after this visit, I was walking to the lab and I just remember thinking, wow, I haven't thought about my vision in a couple hours. 38 00:03:15,430.099 --> 00:03:18,70.099 It's been a while and that wasn't typical for me at the time. 39 00:03:18,70.099 --> 00:03:25,990.099 It was something that was kind of always on my mind and I remember that kind of focused what I wanted to do from that point forward. 40 00:03:26,580.099 --> 00:03:31,950.099 I thought to myself, I want to be however I can be a part of the solution. 41 00:03:32,0.099 --> 00:03:34,260.099 I want to be a part of that for someone else. 42 00:03:34,360.099 --> 00:03:36,50.099 I want to change my focus. 43 00:03:36,50.099 --> 00:03:41,840.098 At the time I was a biomedical engineer, uh, student at the University of Texas, and at that time I changed. 44 00:03:41,840.098 --> 00:03:46,190.099 I came over to the University of Houston as a graduate student, and I've been here ever since. 45 00:03:46,490.099 --> 00:03:55,870.098 Again, trying to focus on these aspects of correcting the eye of Keratoconus, trying to fill in, help others who are searching for something in that way. 46 00:03:55,870.099 --> 00:03:58,935.099 So Yeah, that's how I got to where I am today. 47 00:03:59,865.099 --> 00:04:02,55.099 Wow, that is so amazing. 48 00:04:02,55.099 --> 00:04:04,255.099 I've actually never heard your story like that. 49 00:04:04,265.099 --> 00:04:05,515.099 That's so cool. 50 00:04:06,235.099 --> 00:04:12,995.198 And how many years have you been at the University of Houston? I've been here for, I think I came in 2002. 51 00:04:13,175.198 --> 00:04:16,325.199 So I guess that's roughly 23 years. 52 00:04:16,495.199 --> 00:04:16,745.199 Wow. 53 00:04:16,745.199 --> 00:04:18,875.199 And I had a two year period where I worked at. 54 00:04:19,350.199 --> 00:04:22,400.199 Johnson Space Center down in Clear Lake, after my Ph. 55 00:04:22,400.199 --> 00:04:22,670.199 D. 56 00:04:22,690.199 --> 00:04:25,600.199 I went down there for a bit and then, came back here. 57 00:04:25,610.199 --> 00:04:28,590.199 So all told roughly 20 years here. 58 00:04:28,680.199 --> 00:04:31,490.199 But to be honest with you, it feels like about two. 59 00:04:32,140.199 --> 00:04:33,370.198 It went by very quickly. 60 00:04:34,30.198 --> 00:04:35,770.198 Because I think, when you find. 61 00:04:36,915.198 --> 00:04:44,645.198 The community where you fit in, it makes it not like a job if it makes it work and I'm sure you feel the same way. 62 00:04:44,665.198 --> 00:04:49,65.1965 You know, How can it have been actually 20 years? I know it's amazing. 63 00:04:50,65.1975 --> 00:04:51,55.1975 It is. 64 00:04:51,545.1965 --> 00:04:52,835.1975 It is so much fun. 65 00:04:52,915.1975 --> 00:04:55,425.1975 And I'm a little biased, but I think I cares the best. 66 00:04:56,55.1975 --> 00:04:58,905.1975 And I think we have just a wonderful community. 67 00:04:59,695.1975 --> 00:05:00,405.1975 Oh, for sure. 68 00:05:00,485.1975 --> 00:05:08,265.1975 It really is an amazing collection of people working on hard problems that affect people's everyday lives. 69 00:05:08,275.1975 --> 00:05:10,195.1975 So really kind of an honor to get to do it. 70 00:05:11,980.1975 --> 00:05:13,210.1975 It sure is. 71 00:05:13,690.1975 --> 00:05:27,750.1965 I actually ran across one of your recent publications that I'd love to hear more about, and that is the visual acuity prediction based on different refraction types for patients with Down syndrome. 72 00:05:27,810.1965 --> 00:05:28,290.1965 Please. 73 00:05:28,525.2975 --> 00:05:31,219.1775 Share a bit about that publication. 74 00:05:31,219.1775 --> 00:05:31,668.1575 Yeah. 75 00:05:31,668.1575 --> 00:05:35,566.1175 Yeah, so, that work is led by Dr. 76 00:05:35,566.1175 --> 00:05:36,476.1175 Heather Anderson. 77 00:05:36,486.1175 --> 00:05:42,246.1165 She's at the Ohio State University and we have a really great team of individuals that works on that project. 78 00:05:44,86.1165 --> 00:06:01,521.1175 The main focus for that is individuals with Down Syndrome, it can be very difficult in the clinic because Some of the cognitive difficulties they have participating in the eye exam, you can think about, the use of the phoropter and subjective refraction and that's a hard task for anybody. 79 00:06:02,211.1165 --> 00:06:10,21.1175 The decisions I think that we're asked, which of these two is better and there's these very slight differences that you're making judgments on, that's a difficult task. 80 00:06:10,916.1175 --> 00:06:29,606.1175 In Down syndrome, there does tend to be some, cognitive difficulty that makes that harder, but with, Down syndrome, these individuals also have elevated aberrations, you know, so to some degree, if you wanted to think about it as a continuum, I think what we found was that if you think about typically sighted individuals as having a low level of. 81 00:06:31,266.1185 --> 00:06:36,656.1185 in the eye and keratoconus patients as having a higher level of aberrations in the eye. 82 00:06:36,696.1185 --> 00:06:38,526.1185 Individuals with Down syndrome are somewhere in the middle. 83 00:06:39,336.1185 --> 00:06:49,696.1185 So this makes, these techniques like subjective refraction very difficult, even more challenging,, the work that we're doing is looking at objective measures based on these aberrations. 84 00:06:49,786.1185 --> 00:06:50,126.1185 And. 85 00:06:50,351.1185 --> 00:06:59,901.1175 Leveraging prior work that has shown that some of these visual image quality metrics, the change that you see in visual image quality is related to a change in acuity. 86 00:07:00,251.1185 --> 00:07:07,716.019 What we're trying to do is basically leverage these changes in the objective measure of the visual image quality. 87 00:07:08,586.119 --> 00:07:13,446.119 For an eye and try and provide the best optical correction we can for these patients. 88 00:07:13,456.119 --> 00:07:17,116.118 Essentially, we're taking the subjective nature of the refraction out of it. 89 00:07:17,236.119 --> 00:07:21,816.119 They don't have to provide answers, which is better one or two, and guide the clinician. 90 00:07:21,836.12 --> 00:07:25,826.12 We can measure the eye and with this visual image quality metric. 91 00:07:26,511.12 --> 00:07:34,371.02 We can basically optimize their visual image quality by providing them a specific spirocylindrical refraction. 92 00:07:34,971.02 --> 00:07:35,491.02 Wow. 93 00:07:35,511.02 --> 00:07:37,431.02 That's, oh, that's so fantastic. 94 00:07:37,871.019 --> 00:07:46,691.019 So on a prior episode of this podcast, we were talking about down syndrome and visual quality, but you're coming up with the solutions. 95 00:07:47,566.02 --> 00:07:49,336.02 Which is absolutely amazing. 96 00:07:50,256.02 --> 00:08:00,889.95863044 When are we going to see this? When are we going to see this in clinical practice? Well, yeah, I think that's a, I think, uh, Mary asked me the same question about wavefront guided refractions before we hopped on. 97 00:08:00,889.95863044 --> 00:08:07,739.95813044 I think, these are questions I think that it's a scientific question, but it's also a clinical practice question. 98 00:08:07,739.95813044 --> 00:08:28,269.95813043 I think when you think about any of these novel approaches to solutions, a lot of it is, when we do research, we're thinking about in general in the population, how does the performance of the population shift on app? I think for something like this to become mainstream, there's more work that needs to be done on individualizing the benefit. 99 00:08:28,339.95813043 --> 00:08:34,439.95763043 How can you predict the benefit for an individual rather than a group as a whole? So that's where it needs to be done. 100 00:08:34,779.95763043 --> 00:09:01,489.95763043 But the other thing I think that underpins keratoconus work as well as this down syndrome work, which is again, Really work in a population with elevated aberrations is We need to make Measurement of the aberrations in the clinic more routine, you know, when you think about aberrations, I think most Practitioners and most, people working in those environments know about aberrations, but I don't think they're things we measure routinely. 101 00:09:02,439.95763043 --> 00:09:13,29.95813043 So there's this blind spot to the aberrations to the fact that, people are suffering from these visually, important aberrations other than sphere and so. 102 00:09:13,689.95813043 --> 00:09:26,724.95813043 For our listeners, and for those who don't know what aberrations are, can you explain that please? Well, I think, most people who have been to the eye doctor are familiar with the subjective refraction, which is better one or two. 103 00:09:27,364.95713043 --> 00:09:40,489.95713043 And this is a process that, will identify a pair of Glasses and potentially contact lenses, the optical prescription of which corrects for aberrations sphere and cylinder. 104 00:09:40,619.95613043 --> 00:09:45,919.95713043 These are the common type of aberrations we correct for with, standard glasses and contact lenses. 105 00:09:46,729.95613043 --> 00:09:49,719.95513043 PRISM also can go into that category, but it's a little bit different. 106 00:09:49,779.95613043 --> 00:09:51,109.95613043 We use it for a little bit different reasons. 107 00:09:51,109.95613043 --> 00:09:52,699.95613043 So we'll just say sphere and cylinder. 108 00:09:52,699.95613043 --> 00:10:00,379.95613043 But when you talk about individuals like you were asking about with the Down syndrome population and the population with keratoconus, these groups have. 109 00:10:01,259.95613043 --> 00:10:14,239.95563043 optical aberrations other than sphere and cylinder that are visually important, I should say all eyes, all typically sighted individuals, all eyes of all people have these other aberrations. 110 00:10:14,239.95563043 --> 00:10:21,544.95613043 They're just at a low level where they don't influence to a large degree, the individual's, visual percept. 111 00:10:21,564.95613043 --> 00:10:29,434.95613043 So I think we could easily achieve an age matched level of acuity, by correcting sphere and still in the typical population. 112 00:10:29,434.95613043 --> 00:10:33,874.95513043 But when you talk about an individual with maybe down syndrome or keratoconus, these. 113 00:10:34,219.95613043 --> 00:10:37,369.95613043 Other aberrations, what we would call higher order aberrations. 114 00:10:37,374.95613043 --> 00:10:50,194.95613043 The amount of them starts to creep up so that even if you correct sphere and cylinder, these other aberrations will remain uncorrected and they will degrade the retinal image and therefore the visual percept of the individual. 115 00:10:51,374.95613043 --> 00:11:00,99.95613043 So again, since, the subjective refraction process, like use of a otter doesn't quantify these aberrations, they sometimes go unnoticed. 116 00:11:00,784.95613043 --> 00:11:08,954.95613043 So maybe in the clinical sense the individual may not be performing as you like, or they may have these complaints that they continue to have. 117 00:11:09,749.95613043 --> 00:11:14,389.95613043 And part of that could be due to the fact that they have these other aberrations that we can't really see. 118 00:11:14,739.95613043 --> 00:11:15,299.95613043 We're not measuring. 119 00:11:17,129.95613044 --> 00:11:17,589.95613044 Thank you. 120 00:11:17,759.95513044 --> 00:11:19,179.95513044 That was very clear. 121 00:11:21,239.95513044 --> 00:11:26,489.95513044 Changing subjects a little bit, I would love to get your perspective on the Keratoconus personality. 122 00:11:26,959.95513044 --> 00:11:30,749.95413044 So we hear about this, there have been multiple studies. 123 00:11:31,279.95413044 --> 00:11:33,409.95513044 We UC Davis. 124 00:11:34,59.95513044 --> 00:11:54,789.95413044 So what do you think drives the clinical perception that keratoconus patients are somehow different from other types of patients? Yeah, like I said in the beginning, I think if you had seen me in the early days, I would probably be this, what you might consider the classic Keratoconus personality. 125 00:11:54,789.95413044 --> 00:12:02,259.95413044 I was an engineer, and just as a rule, I think engineers can be challenging, you know, worrying about that one degree of cylinder access or whatever it happens to be. 126 00:12:03,9.95413044 --> 00:12:05,169.95313044 But I think, if we classify. 127 00:12:05,464.95413044 --> 00:12:14,344.95413044 The Keratoconus personality as someone who, maybe if we put a positive spin on it is they're continuing to try and meet an unmet need of their own. 128 00:12:14,364.95413044 --> 00:12:19,154.95313044 They're trying to seek out a solution for a problem that they perceive that they have. 129 00:12:19,374.95413044 --> 00:12:22,654.95413044 From the other side of the chair, it might be, Oh, this patient tends to be a little bit difficult. 130 00:12:22,904.95413044 --> 00:12:25,494.95413044 I tend to look at it like they're trying to. 131 00:12:26,354.95413044 --> 00:12:27,424.95413044 fill an unmet need. 132 00:12:28,84.95413044 --> 00:12:48,834.95213044 I wonder if this need wouldn't, if this kind of personality would not manifest in any group where a gap in technology existed, so for instance, if I were to say to a clinician, if you had a typically sighted group, if you brought a thousand typical patients in, but the optical corrections you provided to them were only in two diopter steps. 133 00:12:49,959.95213044 --> 00:12:50,289.95213044 Okay. 134 00:12:50,629.95213044 --> 00:12:56,29.95213044 So we know that for the majority of these patients, we're leaving some residual sphere uncorrected. 135 00:12:56,109.95213044 --> 00:13:04,179.95213044 Would some of those present as being difficult or would they continue to seek a solution? And I think the answer is yes. 136 00:13:04,219.95113044 --> 00:13:13,954.95213044 Or, if you only had sphere lenses and you tried to fit the astigmatic population with only the spherical equivalent, would they continue? To seek more. 137 00:13:13,954.95213044 --> 00:13:15,874.95213044 And I think again, the answer is yes. 138 00:13:15,924.95213044 --> 00:13:18,294.95213044 And I think that's exactly what's happening in Keratoconus. 139 00:13:18,354.95213044 --> 00:13:20,274.95213044 And not just on the optical dimension. 140 00:13:20,274.95213044 --> 00:13:24,854.95113044 I think that, the current solutions for Keratoconus in the clinic are absolutely amazing. 141 00:13:24,864.95213044 --> 00:13:25,734.95313044 They're a miracle. 142 00:13:26,154.95313044 --> 00:13:29,464.95313044 They make, individuals functional that might not otherwise be. 143 00:13:30,24.95313044 --> 00:13:40,314.95413044 I think if we think about the dimensions of optical correction and these higher order aberrations, or perhaps, the wear time of the solution or the expense of the solution, or. 144 00:13:40,699.95413044 --> 00:13:48,439.95413044 the chair time, I think, there's a technology gap and they are continuing to seek, to get that gap filled. 145 00:13:48,889.95313044 --> 00:13:51,359.95413044 I don't know if that resonates with you as a clinician. 146 00:13:51,360.05413044 --> 00:13:54,489.95413044 Oh, it definitely resonates as a clinician. 147 00:13:54,499.95413044 --> 00:14:03,609.95413044 And what I find is another gap is the importance of empathy when it comes to keratoconus and really listening. 148 00:14:04,74.95413044 --> 00:14:08,344.95413044 To the story and hearing the journey, because everyone has their own journey. 149 00:14:09,14.95413044 --> 00:14:20,594.95313044 And when I have a patient who comes in, I like to listen and really understand where they've been, what brought them to me and hear their story. 150 00:14:20,604.95313044 --> 00:14:26,44.95313044 So the wonderful thing about the national care to Kona's foundation is that we have resources. 151 00:14:26,44.95313044 --> 00:14:33,675.00313044 We have so many different resources and there's literature that I can share with my patients and they love that there's actually a community. 152 00:14:34,140.00313044 --> 00:14:39,400.00313044 I have patients who've never met anyone with keratoconus, and I always joke, just sit out in the waiting area. 153 00:14:39,850.00313044 --> 00:14:40,700.00313044 You'll make some friends. 154 00:14:41,320.00313044 --> 00:14:47,470.00263044 sometimes they get talking, but keratoconus is actually so common, but many people have had such a journey. 155 00:14:47,470.00263044 --> 00:14:51,710.00313044 So I think that we need to talk about the psychology of keratoconus a little bit more. 156 00:14:52,210.00313044 --> 00:14:54,350.00313044 We need to talk about the importance of empathy. 157 00:14:55,180.00313044 --> 00:14:59,330.00313044 And I would love to get your perspective as well, your unique perspective. 158 00:14:59,750.00313044 --> 00:15:09,215.00313044 What can practitioners do today to try and empathize with their patients who are diagnosed with keratoconus? it's really interesting. 159 00:15:09,215.00313044 --> 00:15:12,265.00313044 Sometimes I don't, often get a chance to talk about these. 160 00:15:12,295.00313044 --> 00:15:15,965.00313044 usually we're dealing with the math and the numbers and measuring things. 161 00:15:15,965.00313044 --> 00:15:22,615.00213044 And so this is a really interesting conversation for me to have, your point about the isolation. 162 00:15:22,645.00313044 --> 00:15:24,75.00213044 I think that's very true. 163 00:15:24,75.10213044 --> 00:15:38,100.00263044 And, I certainly felt that in my early days and coming to U of H and working here, I think I was able to see a much larger picture that some patients may never see, that they're not the only ones, that there's a lot of people out there. 164 00:15:38,200.00263044 --> 00:15:46,110.00363044 And where I saw that most was we did a, National Care Dakotas Family Day in Houston, where we had, National Care Dakotas Foundation brought together resources. 165 00:15:46,110.00363044 --> 00:15:48,710.00313044 Just as we had families come in the beginning of the meeting. 166 00:15:49,315.00313044 --> 00:15:57,195.00313044 With the organization, there was a lot of doctors and scientists and we were giving all these resources and I was kind of envisioning the whole day would be delivery to the group. 167 00:15:57,795.00313044 --> 00:16:05,195.00413044 But over the course of the day, what I saw was that the patient started to huddle up and communicate with each other and talk about their experiences. 168 00:16:05,215.00313044 --> 00:16:10,395.00413044 And we, as the people giving the information were we were no longer, our material was not the focus. 169 00:16:10,545.00313044 --> 00:16:14,775.00413043 They were talking with each other, and I really thought that was a great outcome of that event. 170 00:16:15,435.00413044 --> 00:16:22,825.00413044 So yeah, that kind of isolation, it is important for patients to know that a lot of people deal with this. 171 00:16:23,635.00413044 --> 00:16:29,525.00413044 And again, I think from the perspective of what I think clinicians might do, I think your point about empathy is a good one. 172 00:16:30,225.00413044 --> 00:16:41,65.0041304 One of the challenges, I think, with Empathy is that it's hard to empathize when you don't have a sense of what the actual problem for the patient is. 173 00:16:41,65.0041304 --> 00:16:46,385.0041304 And I think, again, if you think about it one dimensionally from an optics problem, and it's more than that. 174 00:16:46,415.0041304 --> 00:16:47,659.9041304 But if we just think about that. 175 00:16:49,10.0041304 --> 00:17:16,480.0041304 Since we don't measure aberrations routinely in the clinic, we can't really know what the patient's dealing with other than what they tell us, right? We can hear their words, but I think if we were again, more routinely measuring these patients and their aberrations, even in the absence of an ability to do anything about it, even if we can't correct them, if we were measuring them, I think that would really go a long way towards, understanding the consequence of their disease. 176 00:17:17,40.0041304 --> 00:17:20,540.0041304 You know, we do a lot of research here where we try and correct aberrations for patients. 177 00:17:20,560.0041304 --> 00:17:27,620.0031304 And one of the more impactful situations we had was a patient who was 2020 with, his habitual correction. 178 00:17:27,680.0041304 --> 00:17:29,40.0051304 But he was very unhappy with that. 179 00:17:29,700.0051304 --> 00:17:47,130.0051304 and you kind of wonder, how can a patient be unhappy with 2020 vision that's confusing, but if you measure the residual or uncorrected aberrations, the higher order aberrations, which persisted even while they were wearing their correction, then it became clear, like, okay, this patient has a lot of residual uncorrected aberrations. 180 00:17:47,430.0051304 --> 00:17:49,990.0041304 They're able to read down the chart to that 2020 line. 181 00:17:49,990.0061304 --> 00:17:50,570.0051304 So quantitatively. 182 00:17:51,780.0051304 --> 00:17:55,490.0051304 They may be in that typical range, but qualitatively, they're still suffering. 183 00:17:56,300.0051304 --> 00:17:56,590.0051304 Right. 184 00:17:56,870.0051304 --> 00:17:59,50.0051304 I always felt like a blurry 2020. 185 00:17:59,880.0051304 --> 00:18:00,560.0061304 From the operations. 186 00:18:01,390.0061304 --> 00:18:04,200.0061304 It's not a good, crisp quality of vision. 187 00:18:05,840.0061304 --> 00:18:06,660.0061304 Yeah, absolutely. 188 00:18:06,750.0061304 --> 00:18:18,369.9061304 Definitely blurry, but also I think that One other thing that the subjects can be challenging is like the aberrations in the two eyes of the same patient can be very asymmetric. 189 00:18:18,500.0061304 --> 00:18:22,0.0051304 They're always, they're consistently presented with these two images. 190 00:18:22,10.0051304 --> 00:18:34,460.0061304 So if you think about the phoropter, if we're asking patients, which is better, one or two, some of these patients may be going through their whole life, asking that question with their two eyes, which is better, one or two, they're looking through and they're seeing kind of these. 191 00:18:35,160.0061304 --> 00:18:39,90.0061304 Asymmetric quality of vision between their two eyes. 192 00:18:39,100.0061304 --> 00:18:46,880.0071304 So I think that, even when all the clinical signs, like reading down the chart or whatever, telling you that the patient should be happy. 193 00:18:47,310.0061304 --> 00:18:52,670.0061304 Some of these residual uncorrected errors can have significant impact on quality of life. 194 00:18:52,670.0061304 --> 00:18:57,470.0061304 And I think they influence what we consider the keratoconus personality. 195 00:18:58,170.0061304 --> 00:18:59,920.0061304 Oh, that's so insightful. 196 00:19:00,90.0061304 --> 00:19:01,290.0061304 I completely agree. 197 00:19:02,5.0061304 --> 00:19:15,25.0071304 So what's your hope for the future of clinical care for patients with KC? Yeah, I have a couple and some of them are not realistic, but I hope, like any disease, someone figures out how to cure it so that people don't suffer from it. 198 00:19:15,55.0071304 --> 00:19:16,435.0081304 That person won't be me. 199 00:19:16,535.0081304 --> 00:19:21,425.0081304 I was talking with someone about this the other day, actually, for students who are interested in, working in the lab. 200 00:19:21,875.0081304 --> 00:19:27,190.0081304 You know, we don't really work on Why people have keratoconus or how to, not have keratoconus. 201 00:19:27,270.0081304 --> 00:19:30,600.0081304 We only deal with trying to help them once they have it. 202 00:19:31,230.0081304 --> 00:19:34,60.0071304 So yeah, it would be great if someone figured that out, but it won't be me., 203 00:19:34,110.0081304 --> 00:19:36,810.0081304 when I think about this disease, I think about. 204 00:19:37,435.0081304 --> 00:19:39,145.0081304 The 12 year old that's out there right now. 205 00:19:39,145.0081304 --> 00:19:40,275.0081304 They're in middle school today. 206 00:19:40,675.0081304 --> 00:19:44,275.0081304 Maybe right now as we're doing this, they're in some math class or whatever. 207 00:19:44,275.0081304 --> 00:19:51,585.0091304 And they see well at the board, but maybe in five years or seven years or whatever, maybe they're starting to wear glasses. 208 00:19:51,585.0091304 --> 00:20:02,235.0091304 And then eventually at some point they're told they have keratoconus, My hope for at least the work we're doing, and a lot of people, not just me or our labber, I hope we're ready for that person. 209 00:20:02,415.0081304 --> 00:20:09,755.0091304 I hope we're ready when they are eventually diagnosed with this condition that we are ready to provide them with the choice. 210 00:20:10,400.0091304 --> 00:20:24,150.0086304 That allows them to fill the gap that maybe patients earlier, in time, couldn't fill I would hope that they experience they go in and then they continue on the path, which they chose that it's not a. 211 00:20:24,685.0086304 --> 00:20:27,555.0086304 It's not changing some of the choices they might make otherwise. 212 00:20:27,585.0086304 --> 00:20:29,785.0086304 And I think we're going that way a long way. 213 00:20:29,785.0086304 --> 00:20:35,335.0086304 I think scleral lenses and the research that's happening and more choices are available to people. 214 00:20:35,345.0086304 --> 00:20:40,955.0096304 I hope that we continue to move these forward and, more choices available to those individuals. 215 00:20:41,785.2096304 --> 00:20:56,535.2096304 And Jason, I hope from a practitioner perspective that we're looking for keratoconus in every single patient, I do believe that we need to rule out keratoconus just like we need to rule out dry eye in every patient that we see. 216 00:20:56,545.2086304 --> 00:21:06,135.2096304 So for all the practitioners out there, please evaluate for keratoconus in that 12 year old and that 17 year old and the 35 year old. 217 00:21:06,615.2096304 --> 00:21:10,915.2096304 You know, we've had discussions to just be on the lookout for it. 218 00:21:10,915.2096304 --> 00:21:16,315.2096304 Keratoconus is actually much more common than we ever knew before. 219 00:21:18,195.2096304 --> 00:21:18,555.2096304 For sure. 220 00:21:18,555.2096304 --> 00:21:21,355.2096304 I think the detection, the ability to detect the disease is. 221 00:21:21,935.2096304 --> 00:21:25,285.2096304 Increasing, we're able to identify those individuals much more than in the past. 222 00:21:25,345.2096304 --> 00:21:26,25.2096304 Absolutely. 223 00:21:27,595.2096304 --> 00:21:34,855.2096304 Can I add one last thing? I hope that science and clinical practice keep moving forward to provide additional resources for patients. 224 00:21:35,465.2086304 --> 00:21:41,405.1101304 I think the thing I would want maybe patients to know, right now, because again, we talked about it can be isolating., 225 00:21:42,105.1101304 --> 00:21:50,335.1101304 I think if you were to take 100 people with keratoconus and put them in a room, and then you were to ask somebody, Okay, all these individuals have a common condition. 226 00:21:50,335.1101304 --> 00:21:59,905.1081304 What is it? The majority of people wouldn't say vision because, they wear contact lenses and you wouldn't appear to the outside world that's is what they suffer from. 227 00:22:00,285.1081304 --> 00:22:01,335.1091304 So it is isolating. 228 00:22:01,485.1091304 --> 00:22:08,465.1091304 And I, I hope that patients know that there are a lot of people who are dedicated. 229 00:22:08,935.1091304 --> 00:22:19,505.1091304 To this area, to improving care in the clinic and in science I want the patients to know when they wake up and they're putting on their contact lenses, there are people in the world working on these problems. 230 00:22:19,555.1091304 --> 00:22:22,115.1091304 They are dedicated to this people like yourself, Dr. 231 00:22:22,115.1091304 --> 00:22:22,525.1091304 Barnett. 232 00:22:23,5.1081304 --> 00:22:23,605.1081304 I could go on. 233 00:22:23,665.1091304 --> 00:22:29,5.1101304 We could do a whole podcast on people who are just working in this area, trying to improve these things. 234 00:22:29,15.1101304 --> 00:22:30,845.1101304 So, that's not to give false hope. 235 00:22:31,635.1101304 --> 00:22:33,435.1101304 But I do think it's important to give hope. 236 00:22:33,880.1101304 --> 00:22:37,360.1101304 That, you know, people are dedicated to solving these problems. 237 00:22:38,300.1101304 --> 00:22:41,550.1101304 Well, thank you for all your dedication and all your work. 238 00:22:41,590.1101304 --> 00:22:47,60.1091304 And thank you, Jason, so much for sharing your personal perspective with us. 239 00:22:47,140.1101304 --> 00:22:57,185.1121304 I've worked with you a lot, on the scientific perspective and writing and Talking about optics, but not so much on the personal level. 240 00:22:57,185.1121304 --> 00:22:59,115.1121304 So I really appreciate that. 241 00:22:59,545.1121304 --> 00:23:02,225.1121304 Thank you for your willingness to share with others. 242 00:23:02,655.1111304 --> 00:23:06,995.1111304 And for all of our listeners, thank you so much for joining us on Clearly Casey. 243 00:23:07,475.1121304 --> 00:23:13,685.1121304 Please listen to all of the episodes of the Clearly Casey podcast on Podbean or your favorite podcast app. 244 00:23:14,655.1121304 --> 00:23:16,65.1121304 And for now, I'm Dr. 245 00:23:16,65.1121304 --> 00:23:16,875.1121304 Melissa Barnett. 246 00:23:17,355.1121304 --> 00:23:19,315.1121304 See you next time on Clearly Casey.
Welcome to the Clearly KC by the National Keratoconus Foundation, featuring information about life with keratoconus.
I'm your host, Dr.
Melissa Barnett.
.999Today, I'm really excited to welcome Jason Marzak, who's an associate professor at the University of Houston College of Optometry, where his research over the last 20 years has focused on designing corrections for eyes of individuals with keratoconus.
(00:33):
Jason has a somewhat unique perspective as a researcher in this area because he himself has keratoconus.
Welcome, Jason.
Thank you very much.
I'm very excited to be here.
.999and really appreciate the work that y'all do with this podcast and all your other endeavors related to care to come in.
.999So thank you very much.
(00:54):
Well, thank you so much for joining us on the Clearly KC podcast.
We've had the great opportunity to work together over the years.
Thank you for contributing to our book, Contemporary Scleral Lenses Theory and Application. 14 00:01:08,944.999 --> 00:01:14,885 Share with us a little bit about your journey of keratoconus from diagnosis until now.
(01:16):
Sure.
Maybe at the very beginning, I'll just give a couple of disclosures because they will hit into my, story here.
I'm funded by the National Eye Institute and the American Optometric Association.
.999I also have a commercial relationships with companies, Wavefront Dynamics. 19 00:01:30,884.999 --> 00:01:33,185 We're developing a partnership with Cooper Vision as well.
And we have some patents here at UH related to this technology.
(01:37):
But today I'm just speaking as myself.
I'm not representing any of these people or the university.
And like you said, we're talk a little bit about my story. 24 00:01:44,594.999 --> 00:01:46,114.998 Actually I called my parents this morning. 25 00:01:46,164.999 --> 00:01:47,724.998 I wanted to make sure and get this correct. 26 00:01:47,794.999 --> 00:01:50,774.999 So I called my parents and they confirmed the timeline a little bit.
So I was diagnosed in 1996 around there when I was a college student.
And this is kind of the classic story of Keratoconus, it hit me at a pivotal time, where I was trying to figure out what I was going to do next, what I was going to do for a career, you know, I was probably, What you might consider the typical difficult patient with keratoconus. 29 00:02:10,360.1 --> 00:02:22,600.099 I was searching for answers I was seeking relief from something and at the time I guess I didn't really know what I was seeking But I definitely saw many doctors. 30 00:02:23,640.098 --> 00:02:27,380.098 I was not satisfied if that maybe rings a bell from you for clinically. 31 00:02:27,920.098 --> 00:02:34,160.099 And I remember I went to see a doctor in Austin when I was, doing a master's degree at UT, and his name was, Merle Jackman. 32 00:02:34,700.099 --> 00:02:39,650.098 And that visit, when I went to see him, it completely changed the trajectory. 33 00:02:40,35.099 --> 00:02:52,955.099 Of my career in my life, I thought, what he was able to do, in terms of providing me the correction and I think he really more than anyone to that time, just kind of listened to what I was saying, and he was willing to try some things that were maybe not what. 34 00:02:53,305.099 --> 00:02:54,855.099 Would be typical for Keratoconus. 35 00:02:54,855.099 --> 00:02:57,95.099 He actually fit me in pure vision, Tauric lenses. 36 00:02:57,925.099 --> 00:03:07,455.099 And I just have this recollection that the things I was searching for, it was like I had found them, you know, his solution filled this gap and I remember very distinctly. 37 00:03:08,330.099 --> 00:03:15,420.099 Days after this visit, I was walking to the lab and I just remember thinking, wow, I haven't thought about my vision in a couple hours. 38 00:03:15,430.099 --> 00:03:18,70.099 It's been a while and that wasn't typical for me at the time. 39 00:03:18,70.099 --> 00:03:25,990.099 It was something that was kind of always on my mind and I remember that kind of focused what I wanted to do from that point forward. 40 00:03:26,580.099 --> 00:03:31,950.099 I thought to myself, I want to be however I can be a part of the solution. 41 00:03:32,0.099 --> 00:03:34,260.099 I want to be a part of that for someone else. 42 00:03:34,360.099 --> 00:03:36,50.099 I want to change my focus. 43 00:03:36,50.099 --> 00:03:41,840.098 At the time I was a biomedical engineer, uh, student at the University of Texas, and at that time I changed. 44 00:03:41,840.098 --> 00:03:46,190.099 I came over to the University of Houston as a graduate student, and I've been here ever since. 45 00:03:46,490.099 --> 00:03:55,870.098 Again, trying to focus on these aspects of correcting the eye of Keratoconus, trying to fill in, help others who are searching for something in that way. 46 00:03:55,870.099 --> 00:03:58,935.099 So Yeah, that's how I got to where I am today. 47 00:03:59,865.099 --> 00:04:02,55.099 Wow, that is so amazing. 48 00:04:02,55.099 --> 00:04:04,255.099 I've actually never heard your story like that. 49 00:04:04,265.099 --> 00:04:05,515.099 That's so cool. 50 00:04:06,235.099 --> 00:04:12,995.198 And how many years have you been at the University of Houston? I've been here for, I think I came in 2002. 51 00:04:13,175.198 --> 00:04:16,325.199 So I guess that's roughly 23 years. 52 00:04:16,495.199 --> 00:04:16,745.199 Wow. 53 00:04:16,745.199 --> 00:04:18,875.199 And I had a two year period where I worked at. 54 00:04:19,350.199 --> 00:04:22,400.199 Johnson Space Center down in Clear Lake, after my Ph. 55 00:04:22,400.199 --> 00:04:22,670.199 D. 56 00:04:22,690.199 --> 00:04:25,600.199 I went down there for a bit and then, came back here. 57 00:04:25,610.199 --> 00:04:28,590.199 So all told roughly 20 years here. 58 00:04:28,680.199 --> 00:04:31,490.199 But to be honest with you, it feels like about two. 59 00:04:32,140.199 --> 00:04:33,370.198 It went by very quickly. 60 00:04:34,30.198 --> 00:04:35,770.198 Because I think, when you find. 61 00:04:36,915.198 --> 00:04:44,645.198 The community where you fit in, it makes it not like a job if it makes it work and I'm sure you feel the same way. 62 00:04:44,665.198 --> 00:04:49,65.1965 You know, How can it have been actually 20 years? I know it's amazing. 63 00:04:50,65.1975 --> 00:04:51,55.1975 It is. 64 00:04:51,545.1965 --> 00:04:52,835.1975 It is so much fun. 65 00:04:52,915.1975 --> 00:04:55,425.1975 And I'm a little biased, but I think I cares the best. 66 00:04:56,55.1975 --> 00:04:58,905.1975 And I think we have just a wonderful community. 67 00:04:59,695.1975 --> 00:05:00,405.1975 Oh, for sure. 68 00:05:00,485.1975 --> 00:05:08,265.1975 It really is an amazing collection of people working on hard problems that affect people's everyday lives. 69 00:05:08,275.1975 --> 00:05:10,195.1975 So really kind of an honor to get to do it. 70 00:05:11,980.1975 --> 00:05:13,210.1975 It sure is. 71 00:05:13,690.1975 --> 00:05:27,750.1965 I actually ran across one of your recent publications that I'd love to hear more about, and that is the visual acuity prediction based on different refraction types for patients with Down syndrome. 72 00:05:27,810.1965 --> 00:05:28,290.1965 Please. 73 00:05:28,525.2975 --> 00:05:31,219.1775 Share a bit about that publication. 74 00:05:31,219.1775 --> 00:05:31,668.1575 Yeah. 75 00:05:31,668.1575 --> 00:05:35,566.1175 Yeah, so, that work is led by Dr. 76 00:05:35,566.1175 --> 00:05:36,476.1175 Heather Anderson. 77 00:05:36,486.1175 --> 00:05:42,246.1165 She's at the Ohio State University and we have a really great team of individuals that works on that project. 78 00:05:44,86.1165 --> 00:06:01,521.1175 The main focus for that is individuals with Down Syndrome, it can be very difficult in the clinic because Some of the cognitive difficulties they have participating in the eye exam, you can think about, the use of the phoropter and subjective refraction and that's a hard task for anybody. 79 00:06:02,211.1165 --> 00:06:10,21.1175 The decisions I think that we're asked, which of these two is better and there's these very slight differences that you're making judgments on, that's a difficult task. 80 00:06:10,916.1175 --> 00:06:29,606.1175 In Down syndrome, there does tend to be some, cognitive difficulty that makes that harder, but with, Down syndrome, these individuals also have elevated aberrations, you know, so to some degree, if you wanted to think about it as a continuum, I think what we found was that if you think about typically sighted individuals as having a low level of. 81 00:06:31,266.1185 --> 00:06:36,656.1185 in the eye and keratoconus patients as having a higher level of aberrations in the eye. 82 00:06:36,696.1185 --> 00:06:38,526.1185 Individuals with Down syndrome are somewhere in the middle. 83 00:06:39,336.1185 --> 00:06:49,696.1185 So this makes, these techniques like subjective refraction very difficult, even more challenging,, the work that we're doing is looking at objective measures based on these aberrations. 84 00:06:49,786.1185 --> 00:06:50,126.1185 And. 85 00:06:50,351.1185 --> 00:06:59,901.1175 Leveraging prior work that has shown that some of these visual image quality metrics, the change that you see in visual image quality is related to a change in acuity. 86 00:07:00,251.1185 --> 00:07:07,716.019 What we're trying to do is basically leverage these changes in the objective measure of the visual image quality. 87 00:07:08,586.119 --> 00:07:13,446.119 For an eye and try and provide the best optical correction we can for these patients. 88 00:07:13,456.119 --> 00:07:17,116.118 Essentially, we're taking the subjective nature of the refraction out of it. 89 00:07:17,236.119 --> 00:07:21,816.119 They don't have to provide answers, which is better one or two, and guide the clinician. 90 00:07:21,836.12 --> 00:07:25,826.12 We can measure the eye and with this visual image quality metric. 91 00:07:26,511.12 --> 00:07:34,371.02 We can basically optimize their visual image quality by providing them a specific spirocylindrical refraction. 92 00:07:34,971.02 --> 00:07:35,491.02 Wow. 93 00:07:35,511.02 --> 00:07:37,431.02 That's, oh, that's so fantastic. 94 00:07:37,871.019 --> 00:07:46,691.019 So on a prior episode of this podcast, we were talking about down syndrome and visual quality, but you're coming up with the solutions. 95 00:07:47,566.02 --> 00:07:49,336.02 Which is absolutely amazing. 96 00:07:50,256.02 --> 00:08:00,889.95863044 When are we going to see this? When are we going to see this in clinical practice? Well, yeah, I think that's a, I think, uh, Mary asked me the same question about wavefront guided refractions before we hopped on. 97 00:08:00,889.95863044 --> 00:08:07,739.95813044 I think, these are questions I think that it's a scientific question, but it's also a clinical practice question. 98 00:08:07,739.95813044 --> 00:08:28,269.95813043 I think when you think about any of these novel approaches to solutions, a lot of it is, when we do research, we're thinking about in general in the population, how does the performance of the population shift on app? I think for something like this to become mainstream, there's more work that needs to be done on individualizing the benefit. 99 00:08:28,339.95813043 --> 00:08:34,439.95763043 How can you predict the benefit for an individual rather than a group as a whole? So that's where it needs to be done. 100 00:08:34,779.95763043 --> 00:09:01,489.95763043 But the other thing I think that underpins keratoconus work as well as this down syndrome work, which is again, Really work in a population with elevated aberrations is We need to make Measurement of the aberrations in the clinic more routine, you know, when you think about aberrations, I think most Practitioners and most, people working in those environments know about aberrations, but I don't think they're things we measure routinely. 101 00:09:02,439.95763043 --> 00:09:13,29.95813043 So there's this blind spot to the aberrations to the fact that, people are suffering from these visually, important aberrations other than sphere and so. 102 00:09:13,689.95813043 --> 00:09:26,724.95813043 For our listeners, and for those who don't know what aberrations are, can you explain that please? Well, I think, most people who have been to the eye doctor are familiar with the subjective refraction, which is better one or two. 103 00:09:27,364.95713043 --> 00:09:40,489.95713043 And this is a process that, will identify a pair of Glasses and potentially contact lenses, the optical prescription of which corrects for aberrations sphere and cylinder. 104 00:09:40,619.95613043 --> 00:09:45,919.95713043 These are the common type of aberrations we correct for with, standard glasses and contact lenses. 105 00:09:46,729.95613043 --> 00:09:49,719.95513043 PRISM also can go into that category, but it's a little bit different. 106 00:09:49,779.95613043 --> 00:09:51,109.95613043 We use it for a little bit different reasons. 107 00:09:51,109.95613043 --> 00:09:52,699.95613043 So we'll just say sphere and cylinder. 108 00:09:52,699.95613043 --> 00:10:00,379.95613043 But when you talk about individuals like you were asking about with the Down syndrome population and the population with keratoconus, these groups have. 109 00:10:01,259.95613043 --> 00:10:14,239.95563043 optical aberrations other than sphere and cylinder that are visually important, I should say all eyes, all typically sighted individuals, all eyes of all people have these other aberrations. 110 00:10:14,239.95563043 --> 00:10:21,544.95613043 They're just at a low level where they don't influence to a large degree, the individual's, visual percept. 111 00:10:21,564.95613043 --> 00:10:29,434.95613043 So I think we could easily achieve an age matched level of acuity, by correcting sphere and still in the typical population. 112 00:10:29,434.95613043 --> 00:10:33,874.95513043 But when you talk about an individual with maybe down syndrome or keratoconus, these. 113 00:10:34,219.95613043 --> 00:10:37,369.95613043 Other aberrations, what we would call higher order aberrations. 114 00:10:37,374.95613043 --> 00:10:50,194.95613043 The amount of them starts to creep up so that even if you correct sphere and cylinder, these other aberrations will remain uncorrected and they will degrade the retinal image and therefore the visual percept of the individual. 115 00:10:51,374.95613043 --> 00:11:00,99.95613043 So again, since, the subjective refraction process, like use of a otter doesn't quantify these aberrations, they sometimes go unnoticed. 116 00:11:00,784.95613043 --> 00:11:08,954.95613043 So maybe in the clinical sense the individual may not be performing as you like, or they may have these complaints that they continue to have. 117 00:11:09,749.95613043 --> 00:11:14,389.95613043 And part of that could be due to the fact that they have these other aberrations that we can't really see. 118 00:11:14,739.95613043 --> 00:11:15,299.95613043 We're not measuring. 119 00:11:17,129.95613044 --> 00:11:17,589.95613044 Thank you. 120 00:11:17,759.95513044 --> 00:11:19,179.95513044 That was very clear. 121 00:11:21,239.95513044 --> 00:11:26,489.95513044 Changing subjects a little bit, I would love to get your perspective on the Keratoconus personality. 122 00:11:26,959.95513044 --> 00:11:30,749.95413044 So we hear about this, there have been multiple studies. 123 00:11:31,279.95413044 --> 00:11:33,409.95513044 We UC Davis. 124 00:11:34,59.95513044 --> 00:11:54,789.95413044 So what do you think drives the clinical perception that keratoconus patients are somehow different from other types of patients? Yeah, like I said in the beginning, I think if you had seen me in the early days, I would probably be this, what you might consider the classic Keratoconus personality. 125 00:11:54,789.95413044 --> 00:12:02,259.95413044 I was an engineer, and just as a rule, I think engineers can be challenging, you know, worrying about that one degree of cylinder access or whatever it happens to be. 126 00:12:03,9.95413044 --> 00:12:05,169.95313044 But I think, if we classify. 127 00:12:05,464.95413044 --> 00:12:14,344.95413044 The Keratoconus personality as someone who, maybe if we put a positive spin on it is they're continuing to try and meet an unmet need of their own. 128 00:12:14,364.95413044 --> 00:12:19,154.95313044 They're trying to seek out a solution for a problem that they perceive that they have. 129 00:12:19,374.95413044 --> 00:12:22,654.95413044 From the other side of the chair, it might be, Oh, this patient tends to be a little bit difficult. 130 00:12:22,904.95413044 --> 00:12:25,494.95413044 I tend to look at it like they're trying to. 131 00:12:26,354.95413044 --> 00:12:27,424.95413044 fill an unmet need. 132 00:12:28,84.95413044 --> 00:12:48,834.95213044 I wonder if this need wouldn't, if this kind of personality would not manifest in any group where a gap in technology existed, so for instance, if I were to say to a clinician, if you had a typically sighted group, if you brought a thousand typical patients in, but the optical corrections you provided to them were only in two diopter steps. 133 00:12:49,959.95213044 --> 00:12:50,289.95213044 Okay. 134 00:12:50,629.95213044 --> 00:12:56,29.95213044 So we know that for the majority of these patients, we're leaving some residual sphere uncorrected. 135 00:12:56,109.95213044 --> 00:13:04,179.95213044 Would some of those present as being difficult or would they continue to seek a solution? And I think the answer is yes. 136 00:13:04,219.95113044 --> 00:13:13,954.95213044 Or, if you only had sphere lenses and you tried to fit the astigmatic population with only the spherical equivalent, would they continue? To seek more. 137 00:13:13,954.95213044 --> 00:13:15,874.95213044 And I think again, the answer is yes. 138 00:13:15,924.95213044 --> 00:13:18,294.95213044 And I think that's exactly what's happening in Keratoconus. 139 00:13:18,354.95213044 --> 00:13:20,274.95213044 And not just on the optical dimension. 140 00:13:20,274.95213044 --> 00:13:24,854.95113044 I think that, the current solutions for Keratoconus in the clinic are absolutely amazing. 141 00:13:24,864.95213044 --> 00:13:25,734.95313044 They're a miracle. 142 00:13:26,154.95313044 --> 00:13:29,464.95313044 They make, individuals functional that might not otherwise be. 143 00:13:30,24.95313044 --> 00:13:40,314.95413044 I think if we think about the dimensions of optical correction and these higher order aberrations, or perhaps, the wear time of the solution or the expense of the solution, or. 144 00:13:40,699.95413044 --> 00:13:48,439.95413044 the chair time, I think, there's a technology gap and they are continuing to seek, to get that gap filled. 145 00:13:48,889.95313044 --> 00:13:51,359.95413044 I don't know if that resonates with you as a clinician. 146 00:13:51,360.05413044 --> 00:13:54,489.95413044 Oh, it definitely resonates as a clinician. 147 00:13:54,499.95413044 --> 00:14:03,609.95413044 And what I find is another gap is the importance of empathy when it comes to keratoconus and really listening. 148 00:14:04,74.95413044 --> 00:14:08,344.95413044 To the story and hearing the journey, because everyone has their own journey. 149 00:14:09,14.95413044 --> 00:14:20,594.95313044 And when I have a patient who comes in, I like to listen and really understand where they've been, what brought them to me and hear their story. 150 00:14:20,604.95313044 --> 00:14:26,44.95313044 So the wonderful thing about the national care to Kona's foundation is that we have resources. 151 00:14:26,44.95313044 --> 00:14:33,675.00313044 We have so many different resources and there's literature that I can share with my patients and they love that there's actually a community. 152 00:14:34,140.00313044 --> 00:14:39,400.00313044 I have patients who've never met anyone with keratoconus, and I always joke, just sit out in the waiting area. 153 00:14:39,850.00313044 --> 00:14:40,700.00313044 You'll make some friends. 154 00:14:41,320.00313044 --> 00:14:47,470.00263044 sometimes they get talking, but keratoconus is actually so common, but many people have had such a journey. 155 00:14:47,470.00263044 --> 00:14:51,710.00313044 So I think that we need to talk about the psychology of keratoconus a little bit more. 156 00:14:52,210.00313044 --> 00:14:54,350.00313044 We need to talk about the importance of empathy. 157 00:14:55,180.00313044 --> 00:14:59,330.00313044 And I would love to get your perspective as well, your unique perspective. 158 00:14:59,750.00313044 --> 00:15:09,215.00313044 What can practitioners do today to try and empathize with their patients who are diagnosed with keratoconus? it's really interesting. 159 00:15:09,215.00313044 --> 00:15:12,265.00313044 Sometimes I don't, often get a chance to talk about these. 160 00:15:12,295.00313044 --> 00:15:15,965.00313044 usually we're dealing with the math and the numbers and measuring things. 161 00:15:15,965.00313044 --> 00:15:22,615.00213044 And so this is a really interesting conversation for me to have, your point about the isolation. 162 00:15:22,645.00313044 --> 00:15:24,75.00213044 I think that's very true. 163 00:15:24,75.10213044 --> 00:15:38,100.00263044 And, I certainly felt that in my early days and coming to U of H and working here, I think I was able to see a much larger picture that some patients may never see, that they're not the only ones, that there's a lot of people out there. 164 00:15:38,200.00263044 --> 00:15:46,110.00363044 And where I saw that most was we did a, National Care Dakotas Family Day in Houston, where we had, National Care Dakotas Foundation brought together resources. 165 00:15:46,110.00363044 --> 00:15:48,710.00313044 Just as we had families come in the beginning of the meeting. 166 00:15:49,315.00313044 --> 00:15:57,195.00313044 With the organization, there was a lot of doctors and scientists and we were giving all these resources and I was kind of envisioning the whole day would be delivery to the group. 167 00:15:57,795.00313044 --> 00:16:05,195.00413044 But over the course of the day, what I saw was that the patient started to huddle up and communicate with each other and talk about their experiences. 168 00:16:05,215.00313044 --> 00:16:10,395.00413044 And we, as the people giving the information were we were no longer, our material was not the focus. 169 00:16:10,545.00313044 --> 00:16:14,775.00413043 They were talking with each other, and I really thought that was a great outcome of that event. 170 00:16:15,435.00413044 --> 00:16:22,825.00413044 So yeah, that kind of isolation, it is important for patients to know that a lot of people deal with this. 171 00:16:23,635.00413044 --> 00:16:29,525.00413044 And again, I think from the perspective of what I think clinicians might do, I think your point about empathy is a good one. 172 00:16:30,225.00413044 --> 00:16:41,65.0041304 One of the challenges, I think, with Empathy is that it's hard to empathize when you don't have a sense of what the actual problem for the patient is. 173 00:16:41,65.0041304 --> 00:16:46,385.0041304 And I think, again, if you think about it one dimensionally from an optics problem, and it's more than that. 174 00:16:46,415.0041304 --> 00:16:47,659.9041304 But if we just think about that. 175 00:16:49,10.0041304 --> 00:17:16,480.0041304 Since we don't measure aberrations routinely in the clinic, we can't really know what the patient's dealing with other than what they tell us, right? We can hear their words, but I think if we were again, more routinely measuring these patients and their aberrations, even in the absence of an ability to do anything about it, even if we can't correct them, if we were measuring them, I think that would really go a long way towards, understanding the consequence of their disease. 176 00:17:17,40.0041304 --> 00:17:20,540.0041304 You know, we do a lot of research here where we try and correct aberrations for patients. 177 00:17:20,560.0041304 --> 00:17:27,620.0031304 And one of the more impactful situations we had was a patient who was 2020 with, his habitual correction. 178 00:17:27,680.0041304 --> 00:17:29,40.0051304 But he was very unhappy with that. 179 00:17:29,700.0051304 --> 00:17:47,130.0051304 and you kind of wonder, how can a patient be unhappy with 2020 vision that's confusing, but if you measure the residual or uncorrected aberrations, the higher order aberrations, which persisted even while they were wearing their correction, then it became clear, like, okay, this patient has a lot of residual uncorrected aberrations. 180 00:17:47,430.0051304 --> 00:17:49,990.0041304 They're able to read down the chart to that 2020 line. 181 00:17:49,990.0061304 --> 00:17:50,570.0051304 So quantitatively. 182 00:17:51,780.0051304 --> 00:17:55,490.0051304 They may be in that typical range, but qualitatively, they're still suffering. 183 00:17:56,300.0051304 --> 00:17:56,590.0051304 Right. 184 00:17:56,870.0051304 --> 00:17:59,50.0051304 I always felt like a blurry 2020. 185 00:17:59,880.0051304 --> 00:18:00,560.0061304 From the operations. 186 00:18:01,390.0061304 --> 00:18:04,200.0061304 It's not a good, crisp quality of vision. 187 00:18:05,840.0061304 --> 00:18:06,660.0061304 Yeah, absolutely. 188 00:18:06,750.0061304 --> 00:18:18,369.9061304 Definitely blurry, but also I think that One other thing that the subjects can be challenging is like the aberrations in the two eyes of the same patient can be very asymmetric. 189 00:18:18,500.0061304 --> 00:18:22,0.0051304 They're always, they're consistently presented with these two images. 190 00:18:22,10.0051304 --> 00:18:34,460.0061304 So if you think about the phoropter, if we're asking patients, which is better, one or two, some of these patients may be going through their whole life, asking that question with their two eyes, which is better, one or two, they're looking through and they're seeing kind of these. 191 00:18:35,160.0061304 --> 00:18:39,90.0061304 Asymmetric quality of vision between their two eyes. 192 00:18:39,100.0061304 --> 00:18:46,880.0071304 So I think that, even when all the clinical signs, like reading down the chart or whatever, telling you that the patient should be happy. 193 00:18:47,310.0061304 --> 00:18:52,670.0061304 Some of these residual uncorrected errors can have significant impact on quality of life. 194 00:18:52,670.0061304 --> 00:18:57,470.0061304 And I think they influence what we consider the keratoconus personality. 195 00:18:58,170.0061304 --> 00:18:59,920.0061304 Oh, that's so insightful. 196 00:19:00,90.0061304 --> 00:19:01,290.0061304 I completely agree. 197 00:19:02,5.0061304 --> 00:19:15,25.0071304 So what's your hope for the future of clinical care for patients with KC? Yeah, I have a couple and some of them are not realistic, but I hope, like any disease, someone figures out how to cure it so that people don't suffer from it. 198 00:19:15,55.0071304 --> 00:19:16,435.0081304 That person won't be me. 199 00:19:16,535.0081304 --> 00:19:21,425.0081304 I was talking with someone about this the other day, actually, for students who are interested in, working in the lab. 200 00:19:21,875.0081304 --> 00:19:27,190.0081304 You know, we don't really work on Why people have keratoconus or how to, not have keratoconus. 201 00:19:27,270.0081304 --> 00:19:30,600.0081304 We only deal with trying to help them once they have it. 202 00:19:31,230.0081304 --> 00:19:34,60.0071304 So yeah, it would be great if someone figured that out, but it won't be me., 203 00:19:34,110.0081304 --> 00:19:36,810.0081304 when I think about this disease, I think about. 204 00:19:37,435.0081304 --> 00:19:39,145.0081304 The 12 year old that's out there right now. 205 00:19:39,145.0081304 --> 00:19:40,275.0081304 They're in middle school today. 206 00:19:40,675.0081304 --> 00:19:44,275.0081304 Maybe right now as we're doing this, they're in some math class or whatever. 207 00:19:44,275.0081304 --> 00:19:51,585.0091304 And they see well at the board, but maybe in five years or seven years or whatever, maybe they're starting to wear glasses. 208 00:19:51,585.0091304 --> 00:20:02,235.0091304 And then eventually at some point they're told they have keratoconus, My hope for at least the work we're doing, and a lot of people, not just me or our labber, I hope we're ready for that person. 209 00:20:02,415.0081304 --> 00:20:09,755.0091304 I hope we're ready when they are eventually diagnosed with this condition that we are ready to provide them with the choice. 210 00:20:10,400.0091304 --> 00:20:24,150.0086304 That allows them to fill the gap that maybe patients earlier, in time, couldn't fill I would hope that they experience they go in and then they continue on the path, which they chose that it's not a. 211 00:20:24,685.0086304 --> 00:20:27,555.0086304 It's not changing some of the choices they might make otherwise. 212 00:20:27,585.0086304 --> 00:20:29,785.0086304 And I think we're going that way a long way. 213 00:20:29,785.0086304 --> 00:20:35,335.0086304 I think scleral lenses and the research that's happening and more choices are available to people. 214 00:20:35,345.0086304 --> 00:20:40,955.0096304 I hope that we continue to move these forward and, more choices available to those individuals. 215 00:20:41,785.2096304 --> 00:20:56,535.2096304 And Jason, I hope from a practitioner perspective that we're looking for keratoconus in every single patient, I do believe that we need to rule out keratoconus just like we need to rule out dry eye in every patient that we see. 216 00:20:56,545.2086304 --> 00:21:06,135.2096304 So for all the practitioners out there, please evaluate for keratoconus in that 12 year old and that 17 year old and the 35 year old. 217 00:21:06,615.2096304 --> 00:21:10,915.2096304 You know, we've had discussions to just be on the lookout for it. 218 00:21:10,915.2096304 --> 00:21:16,315.2096304 Keratoconus is actually much more common than we ever knew before. 219 00:21:18,195.2096304 --> 00:21:18,555.2096304 For sure. 220 00:21:18,555.2096304 --> 00:21:21,355.2096304 I think the detection, the ability to detect the disease is. 221 00:21:21,935.2096304 --> 00:21:25,285.2096304 Increasing, we're able to identify those individuals much more than in the past. 222 00:21:25,345.2096304 --> 00:21:26,25.2096304 Absolutely. 223 00:21:27,595.2096304 --> 00:21:34,855.2096304 Can I add one last thing? I hope that science and clinical practice keep moving forward to provide additional resources for patients. 224 00:21:35,465.2086304 --> 00:21:41,405.1101304 I think the thing I would want maybe patients to know, right now, because again, we talked about it can be isolating., 225 00:21:42,105.1101304 --> 00:21:50,335.1101304 I think if you were to take 100 people with keratoconus and put them in a room, and then you were to ask somebody, Okay, all these individuals have a common condition. 226 00:21:50,335.1101304 --> 00:21:59,905.1081304 What is it? The majority of people wouldn't say vision because, they wear contact lenses and you wouldn't appear to the outside world that's is what they suffer from. 227 00:22:00,285.1081304 --> 00:22:01,335.1091304 So it is isolating. 228 00:22:01,485.1091304 --> 00:22:08,465.1091304 And I, I hope that patients know that there are a lot of people who are dedicated. 229 00:22:08,935.1091304 --> 00:22:19,505.1091304 To this area, to improving care in the clinic and in science I want the patients to know when they wake up and they're putting on their contact lenses, there are people in the world working on these problems. 230 00:22:19,555.1091304 --> 00:22:22,115.1091304 They are dedicated to this people like yourself, Dr. 231 00:22:22,115.1091304 --> 00:22:22,525.1091304 Barnett. 232 00:22:23,5.1081304 --> 00:22:23,605.1081304 I could go on. 233 00:22:23,665.1091304 --> 00:22:29,5.1101304 We could do a whole podcast on people who are just working in this area, trying to improve these things. 234 00:22:29,15.1101304 --> 00:22:30,845.1101304 So, that's not to give false hope. 235 00:22:31,635.1101304 --> 00:22:33,435.1101304 But I do think it's important to give hope. 236 00:22:33,880.1101304 --> 00:22:37,360.1101304 That, you know, people are dedicated to solving these problems. 237 00:22:38,300.1101304 --> 00:22:41,550.1101304 Well, thank you for all your dedication and all your work. 238 00:22:41,590.1101304 --> 00:22:47,60.1091304 And thank you, Jason, so much for sharing your personal perspective with us. 239 00:22:47,140.1101304 --> 00:22:57,185.1121304 I've worked with you a lot, on the scientific perspective and writing and Talking about optics, but not so much on the personal level. 240 00:22:57,185.1121304 --> 00:22:59,115.1121304 So I really appreciate that. 241 00:22:59,545.1121304 --> 00:23:02,225.1121304 Thank you for your willingness to share with others. 242 00:23:02,655.1111304 --> 00:23:06,995.1111304 And for all of our listeners, thank you so much for joining us on Clearly Casey. 243 00:23:07,475.1121304 --> 00:23:13,685.1121304 Please listen to all of the episodes of the Clearly Casey podcast on Podbean or your favorite podcast app. 244 00:23:14,655.1121304 --> 00:23:16,65.1121304 And for now, I'm Dr. 245 00:23:16,65.1121304 --> 00:23:16,875.1121304 Melissa Barnett. 246 00:23:17,355.1121304 --> 00:23:19,315.1121304 See you next time on Clearly Casey.
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