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Full narration of “Keratoconus Treatment Options”

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In case you prefer reading a narration of our video for keratoconus patients, here is the entire transcription!

[Naomi] Hello, everyone! And good evening! Thank you for tuning into our presentation "Keratoconus. What's next?" My name is Naomi Anderson. I am the product manager for ScanFitPRO here at EyePrint Prosthetics, and I will be your moderator this evening. On the right side of your screen, there's a chat box where you can submit questions. We are very excited to hear what you guys have to ask us, and with anything that we will miss, we will try to respond to within 20-72 hours. We will be recording this webinar and mailing this out as soon as it's available online. That should be within the next 24 to 48 hours as well. I would like to mention that there are a few topics that we will not be discussing this evening, such as things about insurance, questions about your specific diagnoses, and questions about pricing. These should be directed to your individual practitioners.

Lastly, before we get started, I would like to give a shout-out to the National Keratoconus Foundation for all of the phenomenal work that they do every single day. We are honored to have their support for tonight's presentation. EyePrint is hosting a fundraiser that will be active until midnight tomorrow. We're trying to raise $500, which we'll be matching as a company and donating it directly to the NKCF. Please consider donating if you can. You can find the link on our Facebook page "EyePrint Prosthetics." Additionally, please check out their Facebook page  "NKCF" if you're looking for more information.

All right, let's get started. So joining us this evening are two very esteemed women in the field. Let's start with Dr. Stephanie Woo. Dr. Woo was born and raised in Lake Havasu City, Arizona. She attended the University of Arizona where she graduated Magna Cum Laude with a degree in Biology Science Education. After this, Dr. Woo graduated from Southern California College of Optometry with honors. She then completed a Cornea and Contact Lens Residency at the University of Missouri, St. Louis, where she was trained to fit highly irregular corneas. Dr. Woo was a past president of the Scleral Lens Education Society and an adjunct professor at the Midwestern University. Dr. Woo owns her own practice, the Contact Lens Institute of Nevada, a clinic dedicated entirely to custom contact lenses. Thank you, Dr. Woo, for being here!

[Dr. Woo] Thank you for having me!

[Naomi] Next, we have Dr. Christine W. Sindt. Dr. Sindt is a 1994 graduate of The Ohio State University and College of Optometry. She completed a disease-based residency at the Cleveland Veterans Administration Medical Center in Ohio. Dr. Sindt joined the faculty of the University of Iowa Department of Ophthalmology and Visual Sciences in 1995, where she is still currently the director of the contact lens service and a professor of clinical ophthalmology. She also serves as the consultant for optometrists for the Iowa City Department of Veterans Affairs Medical Center. Dr. Sindt holds 7 U.S. patents and has over 150 publications. She has had numerous funded research grants, and her current projects include elevation specific scleral lens design, higher-order aberration control on contact lenses, ocular health associated with scleral lenses, and smart contact lenses.

Once again, thank you both so much for being here tonight! I think everyone's really excited for what's to come. So to start things off, Dr. Sindt. She's gonna introduce our company a little bit and talk about what we do here at EyePrint.

[Dr. Sindt] All right. Thank you, Naomi, for the introduction! You know, EyePrint is sort of a culmination of working with people that had some very serious eye conditions that, to be honest, I didn't know how to handle. I have been at the University of Iowa for 25 years. I just celebrated my 25th anniversary there. And through that whole time, I have watched the development and worked really with the development of scleral contact lenses, but there were always things that held me back. And I kept thinking if I had more information, if I could look or think about the eye in 3D, I could develop these lenses and fit some of these so irregular eyes, not just keratoconus but corneal transplants and people who've had glaucoma surgeries and just a host of other issues. And really that's where EyePrint started. I worked with some people on developing the polymer that can go on the eye in a non-toxic way. And through the course of research in other areas, I met very brilliant people, software engineers that really all came together and have become a part of the EyePrint family and have brought this vision to life, including, you know, meeting colleagues like Dr. Woo who are so passionate about helping people and just simply wanting to make lives better. In the EyePrint process, we take an impression of the eye, we scan that into 3D space where we have the virtual eyeball. And then, all the fitting really happens in this magic world of software to create this 3D contact lens for the patient. Dr. Woo, do you wanna talk about your journey into specialty lenses?

[Dr. Woo] Yeah! Thanks, Dr. Sindt, and thanks, Naomi, for having me tonight in EyePrint! So it's kind of fitting for tonight because when I was in optometry school and going through the last couple of years, trying to figure out if I wanted to do a residency or not, and it was in my contact lens clinic that really sparked my interest in specialty lenses. So what happened was there was a gentleman who would come into the clinic, and he had keratoconus. And he hadn't been able to see very well for many years and just thought that that's just kinda how it was. And he had really thick glasses, and it just didn't really seem to be working for him. So that's why he was referred to the school. And we fit him with a corneal GP lens for keratoconus, and he was able to see 20/40, going from basically no vision down to 20/40 vision. I think he even got down to 20/30 or 20/25 after a few adjustments to the lens. But to see the look on his face and hear how excited he was to resume his life again, I mean, he hadn't worked because he couldn't see anything. He lost his job. He couldn't drive. You know, when you can't see the big E on the chart of the doctor's office, there's no way it's safe for you to drive. So he really got his life back, his freedom back, and I just thought, "Oh my gosh! This is something in optometry where you can really, really make a difference." And that is what solidified me into doing a contact lens residency. And I know for you, Dr. Sindt, as well. You have made your life's work all about specialty lenses. And you've been one of my mentors all these years, and it's fun that, you know, now we're like sisters and just really good friends. And it's been amazing working with you in EyePrint and all these other companies for keratoconus patients and all sorts of specialty lens patients.

[Dr. Sindt] Yeah. You know, it's interesting that you mentioned that because all these companies, really, everybody, all the companies, we all know each other, and we all really like each other, and it's not a them-against-us situation. It's all of us in it to fight keratoconus. Every single person has that mission to go forward and to just make things better, you know? To bring the fight better. You know, I joke that I didn't find keratoconus. Keratoconus found me. When I started working, when I got interviewed at the university, they said to me, "Do you know how to fit keratoconus?" And during my disease-based residency, I had fit 5 people with keratoconus. So I proudly proclaimed, "Yes, I do. I do know how to fit keratoconus," which is funny. But when I got to the university, I realized pretty quickly how many people have keratoconus, and back then, they said it was one in 2000. And I thought, "Oh, my goodness! Every one of them is in my chair." And so my learning curve was pretty fast with learning and needing to understand what keratoconus was all about. And I suppose there are some other sides.

[Naomi] We do. We do indeed. So we'll skip through this one. That's just a little bit more about the company. If we have time, we can go back to it. So well, you guys kinda got into this a little bit already. But this is the main question we got from people. This is why everyone is here tonight. Can you just talk more about what keratoconus actually is? How it affects people's eyes, their vision? Dr. Woo, would you start us off with this one?

[Dr. Woo] Yeah, yeah! So keratoconus, you know, that's what we're talking about tonight, and that's kind of the main focus of tonight's conversation. And as Naomi has developed this beautiful presentation, but you can see on the slides here different shapes of corneas. So what we're looking at is, basically, if you look at the side of an eyeball, there's the very, very kind of window to the eye called the cornea. And the cornea is the very, very first place that light gets into the eye. So if there's anything going on with that, then there's gonna be some issues with your vision. So as you can see with a normal cornea, you can see that it's pretty like round-shaped, you know? It's got like this normal type of shape. But with keratoconus, what happens is the cornea thins and steepens over time, and that's where you can see that corneal shape now compared to the normal cornea on the left is now starting to kind of bow out and become steeper. Some of the other issues, bullous keratopathy and corneal scarring, those are other issues that cause the cornea to have an irregular shape. And that is why the vision is distorted. We've got this shape that is not normal. And so now, the image that you are receiving is not normal. So we have to do something about that in order to correct the vision. Dr. Sindt, any other comments?

[Dr. Sindt] I think, at this point, we hit keratoconus up on two sides: diagnosing it and diagnosing it early, right? Because when we diagnose it early, and I think we're gonna talk about this as we go along, there are some procedures that we can do, like corneal cross-linking, to stop it, prevent it from progressing or furthering. So we wanna diagnose, we wanna diagnose it early, but we also want to treat the visual symptoms that we see from that. And that could be a host of things, and one of the things, of course, being a contact lens. So if you've got a bump on the cornea, you put a contact lens over it, and it covers up that bump that's on the front surface of the lens. And as we go along, we may talk about other things that cover up that bump, but we still have a bump on the back surface of the lens. Right, Dr. Woo? That can cause constant issues. And I think we'll have some images here where we'll show what people see when they have those bumps.

As I mentioned, when I started, keratoconus, they said, was a disease of one in 2,000 people. As a matter of fact, early on, and this would have been maybe late 1990s, early 2000s, I wanted to do a research project where I looked at the incidents of keratoconus again because I thought, "Oh, it's much more common than 1 in 2,000." And I was actually told it was an orphan disease, nobody cares, we're not giving you money to research it because it's so uncommon. And now, we think it's a disease of about 1 in 400. Why do you think we're diagnosing it more frequently, Dr. Woo?

[Dr. Woo] Yeah, this is also something like when we look at some of the older literature versus some of the newer literature, that's something that is really eye-opening, like wow! It's a lot more common now, you know, and not even in the US but in other countries, where all these really cool studies are coming out. And I think it has to do with the diagnostic tools that we have, that we just didn't have before, especially with keratoconus. You know, in its beginning stages, it's sometimes really only affecting the back surface of the cornea, which we were never able to look at before. And now with some of this incredible technology, we're able to diagnose it faster and, I think, more accurately. And I think that's why we're able to kinda diagnose it a lot better. Would you agree?

[Dr. Sindt] I do. And I think access to healthcare is a big issue as well. You know, back when I first started practicing, some of the diagnostic equipment, the topographical equipment, it really was only available at a major institution. And I would say every eye doctor now has some type of topography in their practice to be able to diagnose these things much earlier than we used to be able to. I think the other thing is, you know, when I first started practicing 25 years ago, people would say, "Well, grandma had bad eyes. I don't know what she had, but she had bad eyes," and people just accepted that they had bad eyes. I don't think people are willing to have bad vision anymore. They go looking for answers. They want those answers. I still think refractive surgery has brought things out a lot, you know? People are going in wanting refractive surgery, and then they find out during the workup for LASIK or for the refractive procedure, they find out that they have keratoconus, and I get a lot of referrals in that way.

[Dr. Woo] Same here. I get referrals every day from LASIK clinics that that person was not a good candidate. And in fact, they really shouldn't be getting LASIK by any means, but they in fact have keratoconus, and they need to look at other options. So, yeah, I agree with you a hundred percent, Dr. Sindt.

[Dr. Sindt] You know, one of the things that always astounds me is how often somebody now is given the diagnosis of keratoconus without a real good explanation of what's going on. I have people that sit in my chair all the time. They said, "I was just told to come here. I don't know what's happening and I need help." And it's scary. It's scary to have that diagnosis. And then you jump on the internet, you consult Dr. Google, and there is so much out there that's really, really scary. And, you know, I think it's a shame that people are getting these diagnoses without getting a lot of the information that goes with them.

[Dr. Woo] Yeah, absolutely! So Naomi, do you have another question for us?

[Naomi] I do, I do. And I was just gonna chime in, you know? That's why we're all here tonight. That's why you both are joining us in answering these questions because so many of these people just don't have access to wonderful ladies like yourselves or, you know, even just standard health care. So having this I think is gonna be really helpful for a lot of people. So once again, thank you both for being here tonight! It's very nice. So a huge question that we get is, "Why can't I just wear glasses?" You know, so many of us wear glasses to correct our vision. Why does it not work on an irregular cornea?

[Dr. Woo] Yeah, that's a really good question. I get this every single day, multiple times a day, multiple emails. I mean, this is something that all eye doctors that are managing keratoconus are gonna get on a daily basis. So the simplest way that I kinda describe it to patients is, when you wear glasses, there's a space of air between the glass and your eyeball. And the problem is when the image is coming in, you're still going through that irregular surface of your actual eyeball. But when we put a special type of contact lens on, that kind of reshapes that front surface of the contact lens, and then it redirects the light, so that it's a much clearer image that's projected onto the retina. Dr. Sindt, do you have any other analogies that you find really effective in explaining why they can't wear glasses?

[Dr. Sindt] Yeah, I use that same analogy. A contact lens is on the eye versus glasses is just like looking through your windshield of your car. It's really no different, you know? Because you have that air gap that's there. And that's a question I do get every day. And you know, sometimes... I had a patient called today and said, "My glasses aren't working for me." And the answer of course is, "Well, you have keratoconus." It's not a choice of contacts with glasses. It's the choice of contacts to see well and glasses to get you to the bathroom.

[Dr. Woo] And that's another question I had, Dr. Sindt, for you is, when patients ask, "Should I have a pair of glasses?", what do you typically tell them?

[Dr. Sindt] It's gonna depend on the level of kerataconus. To some people, glasses don't help at all, or the glasses can be so distorting that it's nauseating, it's terrible, and it's okay to not have glasses. It's okay if they don't work. Many of my keratoconus patients have glasses that are 20 years old, you know, because they just don't work that well. If glasses are at least an option at all, I like to be able to have somebody have something that can help them, but there is a point where the glasses don't help anymore.

[Dr. Woo] I agree. If my patients have some sort of benefit, I always encourage them to have a pair of glasses for those situations where, maybe, you can't wear the lens, it's broken, or you have an eye infection or some other reason where you just can't wear your contacts. And if glasses can get you some functional vision, I always recommend definitely having that as kind of a backup. But I totally agree with you, Dr. Sindt. At some point, there does become a point where glasses are just not gonna help you see better at all in a lot of the severe keratoconus patients. And that's a conversation that we should be having with them because we wanna make sure that their expectations are met. And, you know, if it's gonna provide some sort of value, then for sure have them, just in case. But if it's not gonna help at all, you know, you really don't wanna be wasting your money.

[Dr. Sindt] Yeah, and that's a hard conversation to have with somebody, to be honest. You know, sometimes people want it so much that they really, they just want it, and they will it to work, and it's a hard conversation to be able to have with somebody to say, "Glasses really aren't going to be your option."

[Dr. Woo] Yeah, exactly.

[Dr. Sindt] In this slide here, this is a good example. This has caught up of how a contact lens changes the optics of the eye. What we're looking at here is a point spread function. And so if you took a dot of light, what does that dot of light, that headlight, if you will, look like to somebody that has keratoconus? And the picture at the upper left-hand corner is an eye with keratoconus without any correction at all. And you can see that point of light is spread out. We call that coma. That is spread out. It makes Christmas lights beautiful, but it is not a situation where you wanna drive around, you know, like that. The bottom left-hand one is that same eye with a scleral lens on the eye. And so one of the things you're gonna notice is that it really condenses that point spread function. So this patient is much happier, but it changed the direction of that coma. So instead of the light going up and out, it's now going down and in on this patient. So it would actually change the coma. And this is because even though the optics condensed it, the optics are not perfectly centered over the eye. In the picture in the upper right-hand corner, if we just took those same optics and we centered them over the pupil, we centered the optics over that line of sight, you can see how it changes that coma appearance. And so sometimes people will say, "I got my new contacts. I see better, but it's not great." In many cases, it's because we need to recenter those optics, and they think we're gonna talk about them later on. When we talk about it, they're likely told they have a higher-order optic aberration. Now, the bottom one is where we have the centered optics. And then we have that little bit of astigmatism that that patient had. And you can see that we just brought that point spread function down to a dot again. So we have a lot of ways to manipulate the optics, but you cannot do it in glasses. That upper left one is what you get in classes.

[Naomi] Awesome. Thank you for that, both of you! Dr. Sindt, I would like to stay on the optics just a little bit longer. This is something that we've been working on for a while here at EyePrint, which is the ovate lenses. Could you go into this a little bit for us, please?

[Dr. Sindt] Yes, so one of the things that we have discovered when we started looking at thousands and thousands of people's eyeballs in the 3D space with these 3D images is that eyes aren't really round. Many eyes are actually oval in shape. They're not round in shape, but we keep trying to put these round contact lenses on people's eyes, and it causes some fit issues and some optical issues that we see. One of the fit issues when you try to put something round on something that's oval is we get these teeter-tottering points right at 3 and 9 o'clock on the eye, so nasal and temporal. And the contact lens also falls down a little bit. It just drops down a little bit. And patients end up with a little bit of a red ring around their colored part of their eye. They might get some irritation out in the periphery of the eye. But if we take the contact lens and we make it the same shape as the eye, so not a round contact lens but actually oval, we can center the optics up again, and we can create a situation where we don't have that induced redness to the eye. And we can take the optics and move it around on the lens and actually line those optics up over the pupil again and get rid of a lot of that halo and glare and flare on the eye. This is an example here of where we have the fit of the contact lens, but we can actually move the optical surface separately from the contact lens part itself, so we can get the fit, the comfort of the eye, and then we can move the optics around independently for a better fit and for better optics.

[Dr. Woo] And Dr. Sindt, is this something that any contact lens can do, or is it specific to only certain designs? Can every keratoconus patient get something like this?

[Dr. Sindt] Any of the EyePrint family of products can do this. So we automatically do this not just on the EyePrintPRO, we can do this on the EyeFitPRO, and, to some extent, we can do it on the ScanFitPRO as well. So we can do it on all the EyePrint.

[Naomi] We have pretty great success, I would say, with the ScanFit. In the decentered optics, there are slightly less irregular corneas for that matter. So it's not as important. Not necessarily important, but... Thank you! Yes. Yes. All right, let's move on! This is a really big question that we got that definitely can be concerning to people. Will you go blind from keratoconus? Dr. Woo?

[Dr. Woo] Yeah, this is another question that I get daily. So this is kind of a multifaceted question. And I'll say that with patients that were diagnosed maybe more than 50 years ago, let's say, let's say those patients a lot of times, they were not diagnosed until later in life, so they actually had keratoconus for quite some time, and they weren't diagnosed until later stages. Or they were fit with a contact lens, and then they ended up getting a bunch of scar tissue just because maybe the corneal shape changed or the lens wasn't fitting properly for whatever reason. So I always tell patients that, for the majority, you're not gonna go blind from this disease, especially if you are diagnosed early, and if you do get a treatment to kind of stop or prevent the disease from worsening, such as cross-linking. We also have better contact lens options now that help prevent a lot of the scar tissue that we were seeing before. So there is a study done a while back called the CLEK study, and that was a study that was super interesting, and it just kinda showed that when we're fitting keratoconus patients, we wanna make sure that we don't have the contact lens pushing on the cornea, the keratoconus that cone because that can cause scar tissue. And a lot of times, it's the scar tissue, and that's the worsening of keratoconus that will cause somebody to need a corneal transplant. The good news is if you get a corneal transplant and everything is successful, and a lot of patients have very, very good success with corneal transplants, that provides a clear window to fit a contact lens on again. So in general, I tell patients there's a very, very low chance you're going to go blind, especially if we take some of these precautions now. So if they're young, I always refer for cross-linking to try to slow down the keratoconus from progressing and then fitting them in contact lenses and seeing them on a very regular interval. I don't wanna lose a patient for 3 to 5 years that's wearing the same lens because that can cause major issues down the line. So, Dr. Sindt, I would love to know what you tell patients when they ask you this question.

[Dr. Sindt] Well, you know, we have two surfaces in the eye that we think about when you think about going blind, right? One is the cornea, and that's what we're talking about with keratoconus. The other is the retina or the back surface of the eye. So it's very unlikely that something that's strictly on the cornea is ever gonna cause somebody to go blind. Usually, if it's cornea, there are some procedures that can be done to restore the vision to the retina, and the retina is like the film of the camera, right? So if you have to have that good vision, it requires the retina. So it's very unusual for somebody with keratoconus to go blind. One of the questions that I do get with some regularity is, "I don't know if I wanna wear a contact lens. I'll just go get the corneal transplant." And that's, I think, that is where we have to go, "Whoa! Whoa, whoa, whoa! Let's stop. Let's talk. Make sure you know what you're gonna get." A corneal transplant is an excellent procedure. And certainly, the doctors that I work with directly are amazing at doing corneal transplants, but it's not without risk. And I always say getting a corneal transplant doesn't cure you of the disease. It just takes one disease and essentially gives you something else to worry about, and in that case, it's somebody else's cornea that you'd now have to take care of. Fortunately, contact lenses have developed. I think a recent study showed that 90% of patients that used to get corneal transplants now can be fit successfully and comfortably in contact lenses. So it's unusual for somebody to not be able to achieve good vision, especially if caught early and screened early.

[Naomi] Wonderful! So, Dr. Sindt, this is one that I would like to direct to you as one of your kiddos actually does have keratoconus. This is a multi-part question, so then first off, is this something that can be passed down genetically?

[Dr. Sindt] Well, the first thing you should know is I have forme fruste keratoconus, which means that I have keratoconus. I am not symptomatic of the keratoconus unless my pupils get really large. So, fortunately, I have very small pupils, and I typically don't notice it myself. But it is something that I was aware of right in optometry school, and my children, I have four kids. All of my children as little babies, I would take their little hands away from their eyes, and I would say, "Don't rub your eyes. Don't rub your eyes. Don't rub your eyes." And I sent my oldest son off to school with perfectly good, minus 2.50, no keratoconus eyes. And you know, he was studying, he was up late, his eyes were dry, he'd rub, rub, rub. He came home at Christmas time and said, "I don't see very well." And of course, I went over, and I checked him right away, and he had keratoconus. And I did get him cross-linked. And fortunately, I do know a place to get some good contact lenses, and so we have him seen just fine. And he's now a first-year student in optometry school. So I'm very proud of him, but... Yeah, keratoconus is... We do think of keratoconus as a genetic disease, and it's pretty... We've really shown. I think they've isolated... How many genes? 19 different genes now, I think, that have something to do or maybe something to do with keratoconus. But the big thing, the big take-home point to know here is we have not isolated a gene that causes keratoconus. It's not a condition like other genetic conditions, where if you have the disease with the mutation, you have the disease. Keratoconus isn't like that. We think that the genes have something to do with how the collagen fibers are put together or connected together. And so some people have collagen put together in a certain way. And over time with repeated stress, those collagen fibers can bend and snap and unwind. And as those fibers unwind, the cornea gets thinner. And as the cornea gets thinner, it bulges forward, and that bulge is the keratoconus. So people can be predisposed genetically to having keratoconus, but then when you put other factors in, and the big factor is eye rubbing. So if you have allergies, if you have something else that causes you to rub your eyes, dryness, for example, then that can break those fibers, then the cornea, and you can end up with keratoconus. So is it genetic? Yes, but not fully.

[Naomi] Thank you! So to continue on with this topic a little bit, we've had several parents write in to us, and they want to know the best ways that they can support their children who do suffer from keratoconus, what kinds of things they can do to help out. Some had mentioned things such as screen time, different sports they're playing in, surgeries like cross-linking. What are your thoughts on this?

[Dr. Woo] Yeah, so that's another question we get a lot because if there's a parent that is coming in with their child that has keratoconus, of course, they're very worried about them and what kind of limitations they're gonna have as an adult. And I'll say that most keratoconus patients have very normal lives. They can really do anything as far as careers go, and it really doesn't affect their life as much as other diseases. So I think supporting your children, I would say with the invention and the FDA approval now of cross-linking, that's really given the capability to a lot of parents to actually be able to do something for their child to help prevent it from getting worse. So I am a very pro-cross-linking physician. There are other people that aren't, but I am somebody that if the parent brings their child in to me, and we find out they have keratoconus, I am a huge advocate for them getting cross-linking as soon as they can. And then after that, we will fit them with specialty lenses, but that is kind of the best thing that you can do for your kids if you are able to. Dr. Sindt, do you have other advice as far as screen time, the different sports, and things that parents should be worried about?

[Dr. Sindt] Yeah! So some of the other things… And every child is different. Every keratoconus patient is different. So we really have to look at their lives, at what they enjoy doing. I don't think keratoconus should hold people back from doing the things that they enjoy. But some of the other things that I look at would be allergies, for example. So if a child has a lot of allergies situation, let's co-manage with dermatology or an allergist to find out what they're allergic to and get their allergies under control, both topically and systemically. Another thing is, I have my patients… You can get them on Amazon, there are little vials of saline there, and just chill them in the refrigerator. And instead of rubbing, instead of breaking those collagen fibers, squirt the eye out with cold saline, and it will stop the burn. With keratoconus, they rub differently, right? They rub harder. And if we look at the nerve endings, the only thing we feel in our eyes is pain. And so if the nerve is just tingled a little bit, that's what's gonna feel as itching, and people who have keratoconus will rub until they drive that up that pain scale because mild irritation actually feels better than the tingly, itchy thing that's going on. So rather than rubbing to make it stop itching, squirt it with the cold saline, and that will actually put that tingly, itchy feeling out, so that feeling of needing to rub will then pass. And really the key and the most important thing is, find somebody you trust, find somebody that you feel you can ask questions of. There are no stupid questions, right? Find somebody that you can ask those questions of, somebody who will do the tests say every 6 months, monitor it, make sure you don't have change, and really feel on top of it. As far as screen time, you know, we all should get our kids up to play outside. You know, there's a lot of evidence out there that too much screen time is not gonna be good for the eyes. Certainly, this pandemic and at-home teaching and learning is gonna be hard on the eyes. But when we're on a screen, we don't blink as often, our eyes dry out, and we can have a lot of sensations and feel like we need to rub our eyes. So limiting screen time is probably a good thing in general, but not lubricate.

[Dr. Woo] Yeah, I think that the biggest thing that we know, as far as keratoconus goes, as clinicians is eye rubbing, that's always something that we wanna get under control right away because we know that that has a very, very high association to keratoconus. So I always either prescribe some sort of anti-inflammatory, anti-histamine, something really safe that they can use, especially during allergy season here in the Southwest area. For some reason, in the wintertime, the allergies flare up, all the new winter plants, I guess, and then in the springtime, especially if there is a lot of rain and there's a bunch of pollen. So I wanna make sure that instead of going to your natural reflex of rubbing your eyes, that you're on a really good anti-histamine mast-cell stabilizer to kind of quench that right away. So any keratoconus patients out there, you should definitely talk to your eye doctor and just see if that's something that they would recommend for you. And they can even give you options as far as over-the-counter products that work really well, but definitely check with your eye doctor, and they probably have a ton of great recommendations.

[Dr. Sindt] Yeah, you know, one of the other things I do recommend is tell people in your world that you have keratoconus and you can't rub your eyes. Frequently, patients will say to me, "Nah, I don't think I rub my eyes all that much." And whomever they brought with them that's sitting in the chair next to them goes, "I can hear your eyeballs squish. You rub your eyes all the time," you know? And I think, you know, we rub more than we know we do. You know, how often are you having a conversation and you just, you know, scratch and itch, and you don't even think about it, right? It's the same thing with the eye rubbing. And so if we tell the people closest to us, "Tell me when I do this," people will find patterns in their day. You know, I typically rub my eyes after I'm on the computer, or I typically rub my eyes when I'm going to bed. And then the other thing is if people have unilateral keratoconus, like really bad in one eye, but not so bad in the other eye. Think about your sleeping position. Do you sleep on that side? Is that where you put your face? Do you rub your eye or your head? I had a patient who would like to slide his hand under his pillow, and he would sleep on his knuckle. That was just a habit from childhood. We had to go through behavior therapy in order to get some of these behaviors to change. So if you have a child or an adult that has behaviors they can't change, going through a behavior therapy, talking to a therapist can actually be quite helpful in preventing those therapies. I mean, preventing the eye rubbing.

[Naomi] Wow! Thank you both! That was very informative. I learn something new every time I talk to you guys. All right, so moving on from this one, many people want to know, "How do I stop this from getting worse?" Dr. Woo, what do you tell your patients who come in and ask you this?

[Dr. Woo] Yeah, so depending on the severity and the age and a few other factors, the biggest recommendation I have is cross-linking. And some patients are not good candidates, or they don't need it, but this is definitely an important thing. And also just like Dr. Sindt just said, you know, because we know there's a huge association with eye rubbing or some sort of eye manipulation, for instance what Dr. Sindt said, laying on a certain side of your pillow or putting your hand on your face while you're sleeping, I mean, some of these things that you may not even think about, like, "No, I don't put any pressure on my eye at all." I actually had a patient that came in, and they were recently diagnosed with keratoconus, and they used like an eye mask that had like those rice things in it. So it was really, really heavy on your eyes. And they had been using that for like over a decade. And so that's what we think may have caused this and who knows. So there was a lot of things that, you know, people on this webinar, if you're a keratoconus patient, you might start thinking to yourself, "Hm, you know, do I rub my eyes? Do I have any sort of things where there's extra pressure on my eye in any way?" And you know, that whole like eye mask thing. And that was something that we just kind of dug up after kind of going through some of their history and some of their daily life and kind of just trying to get to the bottom of it. So in that case, the behavior thing, so whatever is causing that extra pressure on the eye, we wanna try to figure out a way to stop. And I agree a hundred percent with Dr. Sindt, a lot of times, patients don't think that they rub their eyes very much, but when they're there with their parent or their friend or their spouse, they're always like, "Oh, you rub your eyes all the time, and you like dig in really hard." And so that's something that you wanna try to kind of get a control on because if you just keep rubbing your eyes and rub, rub, rub, and you're doing that all day and night, that's definitely not good for this condition. Any other tips, Dr. Sindt?

[Dr. Sindt] Yeah, going back to the mask, I recommend, you know, because a lot of times people also have concomitant things like Meibomian gland dysfunction or blepharitis or demodex, and, you know, the heat masks help that a great deal. I always recommend an infrared heat mask, a mask that you plug in, which gets the tissue warm but doesn't make you warm. One of the things that we do know is that when you heat up the tissue that you will distort the collagen. And so if you have a mask that you put on your eyes and when you take it off, you feel like your vision is different, you are applying pressure to your face. So I recommend the infrared masks, not the heavy masks, not the beaded masks, or the weighted masks.

[Dr. Woo] That's an awesome tip. Is that something that you can just easily find online?

[Dr. Sindt] Yes! You know, if you go to the Dry Eye shop, you can find them there. There's many of them online.

[Dr. Woo] Excellent! I love that.

[Naomi] Awesome! Thank you!

[Dr. Sindt] Or goggles at night. If you think you're an eye-rubber at night, wearing some type of a goggle or moisture chamber at night, sleeping, sitting up in a recliner so that you can't roll over and sleep on your stomach. Some of these behaviors can help prevent the night-time eye rubbing.

[Naomi] Cool. Very interesting. Thank you! So I'm sure you guys often have patients in your clinic who have already worn lenses before. As a consultant, this is something that we hear all the time. What happens if a patient's already tried contact lenses in the past? Now, what?

[Dr. Woo] This is such a great question because I know Dr. Sindt and I, and any other doctor that treats keratoconus, they get this every day. I have so many patients, like probably half of my patient base is based off of this question where they were referred to me because they have tried all these other options. You know, it didn't work or all these different things. So I always try to get a really good history of when they were diagnosed, what kind of treatments they've done, what eye drops they were using, and then what kind of contact lenses they have tried in the past. And that will give us, as doctors, some clues as to, maybe, why something didn't work, that will kind of give us some indication on what may work and what may not work. So a lot of times, patients will come in, and they will have issues because they tried soft contact lenses in the past, and that didn't do anything for them. Well, with keratoconus patients, in most of the moderate to severe cases, they are not gonna really respond very much at all to a regular soft contact lens. I'm not talking about soft lenses that are custom-made for keratoconus, but these standard soft contact lenses are just kinda like saran wrap. So think about if your eye is shaped like this, if it just kinda bloops, it doesn't do anything for your vision. So that's a conversation I have a lot with patients. A lot of times, patients have tried corneal gas-permeable lenses in the past, and they couldn't get used to them coz they were so, so, so uncomfortable. And even if they gave it an honest try and they just couldn't get used to them, then they ended up in my chair. And so that gives me clues, you know, they've tried a corneal gas-permeable lens before, and they liked the vision, but they hated the comfort. Okay, now it's time to try something, maybe, like a scleral lens or maybe even a hybrid lens, you know, those kinds of things. So that kind of goes through my head of going through the process of what they've already tried and maybe kind of talk to them about some of the new advances in technology. And it's incredible because even in the past 10 years, even in the past 5 years, contact lens technology has just blossomed, and we have these options now that we didn't have 10 years ago, 15 years ago. I mean, when I was in optometry school 10 years ago, the scleral lenses were just kind of... There wasn't one company that even had them, and we didn't know what we know now as far as the scleral shape and, you know, with Dr. Sindt and her own lenses, I mean, gosh, this has really given us the ability to fit these incredibly complicated corneas. It's just such an exciting time to be involved in specialty lenses. Sorry, I talk a lot there, but it's like so exciting for me.

[Dr. Sindt] You know, I know you absolutely hit the nail on the head, and really what you're getting to is what you've tried in the past is not indicative of what you've tried today. Even 6 months ago, we have new things to try today. You know, I find that really the way forward for me is listening to the patient's past. So when I really hear, I always try to read between the lines, not just "What did you try?" but "What worked? Why didn't it work? What in your life...?" You know, I could have 3 rooms with 3 eyeballs that are exactly the same, but it's the people wrapped around the eyeballs and the lives wrapped around the people that indicate how I'm gonna need to fit, and what I'm gonna need to fit, and whether I'm gonna be successful or not. People are much more complicated than eyeballs, to be honest. Your keratoconus is not the complicated thing. You are, right? That's really what it comes down to. And my job is to understand that person, understand where they're coming from, where they wanna go, and what's more important. And if I accomplish it all, we need to prioritize so that we are all on exactly the same page of what success looks like before we start because if I'm looking at somebody, and I think success is, "I can get you to 20/20, and you can do your job," you know, that is my definition, but my patient's definition of success is, "I wanna be able to wear the contact lenses 18 hours a day and/or never take them off," we may not reach success. We have to be very sure of what you've tried in the past, but what success is gonna look like or feel like, or see like, you know, in the future. And that's from that point, then we can work towards the future.

[Dr. Woo] That's a really good point, Dr. Sindt! And any keratoconus patient on this webinar, something that will really help your doctor is if you come to them and say, "This is what my success would look like" or "These are my goals for my lifestyle and my vision." That will help tremendously because if you have some expectation that we're not gonna be able to get you to or something that may or may not be achievable, that's a conversation we need to have before going down the route of even attempting a fitting. And so if you're on this call, and you're thinking in your head, you know, "Success for me would be to be able to wear a lens 4 hours a day while I'm at work, and then I can take it out when I get home, and just kinda fiddle around the house, I don't need it then," okay. That gives us a really good definition of what you feel like success is. One of my patients that I recently saw was doing amazing in his corneal gas-permeable lens for keratoconus. He saw great, and the fit was excellent, but his major complaint was, he works in a dusty environment, and the dust gets behind that corneal gas-permeable lens, and it's so irritating. He's gotta take his lens off multiple times a day, and that became really cumbersome for him. So in that case, we said, "Okay, well, now we know what success is for you and what's important for your lifestyle. So now I can fit you in a different type of lens kind of based off of your unique needs."

[Dr. Sindt] Right! That's a great example. Another example would be, if somebody came to me and said, "You know, night driving is really important to me. I work second shift. I'm a nurse. I night-drive. I have to be able to get to work. Night driving is super important to me," right? And then they turn around and say, "But I need a bifocal. And I want a bifocal and all these other things." Really, we're gonna have to prioritize. Is the night driving important, a bifocal important, or are you willing to have two pair, right? The one that you drive in and the one that you wear at the office because sometimes you can't achieve all of that. But knowing that ahead of time, we can then strategize. And sometimes, I do have patients, I have plenty of nurses, for example. This is a good example coz I work at a hospital. They need contact lenses to be able to see the patient, the monitor, and charting. And while they're at work, that is their most important focal distance. And I get them contact lenses that they wear at work. But then when they're home and they're driving, and they're doing other things, I have contact lenses that they see really well far away with, and they use reading glasses for those times, right? I have teachers, for example. They need to be able to see what little Billy is doing over there, and then that kid that, you know, has that piece of paper that they're like flapping in their face that's about 6 inches away. Like they have this diverse need. That's a different optical setup than I would do for a truck driver or than I would do for an accountant, right? So really understanding the person's needs, again, and what success looks like is very important. Again, it's these people wrapped around these eyeballs that are more difficult. The eyeballs are quite straightforward.

[Naomi] Definitely, definitely! So it sounds like, I mean, new options are just coming every single day. And, you know, you should never give up hope, talk to somebody who's an expert in this kind of thing, and see what options are out there for you. Awesome. Thank you both! All right, Dr. Sindt, you were specializing in diseases for a while there. What are your thoughts on a cure for this disease?

[Dr. Sindt] For a while.

[Naomi] For a while.

[Dr. Sindt] You know, I think the cure is early diagnosis. I really do. I think, you know, a lot of our colleagues are working on new ways to diagnose. For example, there is a procedure, a test that you can have done, where it basically blows a little puff of air at the eye, and it indents the cornea. And the way the cornea changes with that puff of air can really detect very, very early keratoconus, right? So some of these features, looking at the posterior curvature of the cornea not just the anterior curvature of the cornea, looking at how the light is bending through the cornea, a lot of these things really help us diagnose it much earlier. And I think if we can diagnose these conditions before they start, that really is what the cure is going to look like. Again, we don't know exactly what causes this, other than you have a predisposition and some eye rubbing. So if we can stop the behaviors, bring more awareness to the condition, and diagnose it earlier, then to me, that is what a cure is gonna look like for this disease.

[Naomi] Fantastic! Dr. Woo, do you have any thoughts on that?

[Dr. Woo] Yeah, it's, you know, just like anything, whenever there's a disease, we're always hoping there's a cure and trying to figure out different ways. And I agree with Dr. Sindt, you know, we've got colleagues out there that are doing fantastic research and trying to identify kids that may be at risk for this disease. And I think that if we are able to get to a point where they're screened early enough with the right equipment, then if you treat it early, then you're gonna have a much better outcome and less issues with their visual function over time as they get older. So I agree that early detection is gonna be key for this condition. And then, they are finding ways to kind of identify kids that have these really high-risk factors now. So it's an exciting time for medicine. And of course, we all hope there's gonna be a cure. And I agree with Dr. Sindt, you know, early detection is key.

[Dr. Sindt] Corneal transplant is not a cure, right? I think we should have a public service message, really. It should be like, "Buckle up for safety, " "Smoking kills you," "Don't rub your eyes."

[Dr. Woo] Yeah! Yeah!

[Naomi] So real quick, we've got a couple of questions. Is it acceptable to rub the outside area around the eye just to kinda relieve yourself at all?

[Dr. Sindt] Right. I would squirt. Squirt, don't rub. You know, the question is, "Why are you rubbing?", right? So cure that underneath. Now if you're talking about getting up here and like, oh, you know, rubbing, that kind of stuff, first of all, these are gross. Gross, right? Lots of bacteria, lots of nastiness. Don't touch your face. Don't touch your eyes. It's a great way of introducing things into the eyeball. You know, I get it. I get it. Remember I told you, first, I have a son with keratoconus. I have a 5-year-old that digs and rubs. I totally get how powerful that stimulus is. You need to stop the stimulus. So I would highly recommend drops. Cold, wash it out. Anti-histamine drops if you possibly can.

[Naomi] Fantastic! All right, so this is the last question that we have kind of prepared for you guys, pre-prepared. We are about to hit our 1 hour, but we do have quite a few questions that have come in since we started. So I know Dr. Woo and Dr. Sindt... Go ahead! Go ahead!

[Dr. Sindt] Yeah! Why don't we take some of the questions?

[Naomi] Okay! All right! Well, we can just skip on past this one then. Here, let me just get our information up for you all in case you need to contact us at EyePrint or Dr. Woo. So we talked about RGPs for a little bit, the rigid gas-permeable corneal lenses. Some people have asked, "Why did this make my eyes burn?" Dr. Woo, do you have any thoughts on that?

[Dr. Woo] Why the keratoconus makes it burn or I'm sorry?

[Naomi] The RGPs. Why do my eyes burn after wearing RGPs?

[Dr. Woo] Yeah, that's a good question. So a lot of times, keratoconus comes along with other eye issues. A lot of my keratoconus patients have underlying dry eye. And when you wear any sort of contact lens, it usually is going to make things a bit worse. Because of the lens material, the contact lens material is always fighting with your eyeball for the water that's on your eye, and the material will always win. That's what I always tell patients. And so when you've got your lenses on, it's fighting with your eyeball for moisture, and then you take the lens out, and a lot of times, your eyes just have no more moisture. It's all kind of been sucked off. And you know when you're blinking a lot with these contacts in, it can just kinda change the surface of the eye, the shape, and the tear film. So it kind of disrupts things, and that can be a major indication of some of the burning and things. But using some approved artificial tears that your eye doctor recommends for your specific type of contact lens can really help, using those during the day. And then almost all of my patients are on some sort of lubricant or gel at nighttime to kinda keep their eye lubricated and moisturized.

[Dr. Sindt] Yeah, and treat any underlying Meibomian gland dysfunction. Demodex, I think, is often overlooked. Little mites in the eyelashes are super common, nothing to freak out about, but should be treated. Your doctor should look for that as well. And then other things like if you have a gas-perm lens, if you haven't tried piggybacking, that would be like a daily disposable soft underneath it with the gas-perm lens on top that often can create a more comfortable situation, something to talk to your doctor about.

[Naomi] Great! So let's talk about dry eye for a little bit. This is something that, Dr. Woo, I'm sure you get a lot being out in the middle of Nevada. And then, I mean, Dr. Sindt, I remember working with you. We had tons of patients with dry eye, and Iowa is a very humid place. So how did you become so passionate about this aspect of ocular health? It kinda seemed to just fall in your lap one day, and it just became this big priority of everything, but, you know, everything intertwines with each other. So can you talk about that a little bit?

[Dr. Woo] Yeah, so are you talking about specialty lenses in general or dry eye?

[Naomi] You know, wherever you kinda wanna go with that. Like how do you treat dry eye? What are your thoughts on how specialty lenses can help with this? You know? I know, Dr. Sindt, you have the Meibomian gland... Oh, my gosh! The Meibomian, right? So, Dr. Woo, what about you?

[Dr. Woo] I think that a lot of it has to do with anybody that's really heavily involved with specialty contact lenses, such as Dr. Sindt and myself, it goes hand in hand with dry eye a lot of the times. A lot of our patients have multiple things going on with their eyes. Almost all corneal transplant patients have dry eye to some extent. A lot of keratoconus patients and just a lot of these patients. And it's funny that you mentioned that, Naomi, about, you know, in Iowa being a humid environment and things, but I will tell you that a lot of times that was kind of like what was thought is like, "Well, you know, me being in Arizona and Nevada where it's just dry year-round, there's no humidity." But when my patients go to Iowa or Florida or Hawaii, where there's a lot of humidity, they find they have the same issues. And I think the reason is, most of the time, you're inside, right? You know, even if it's kinda hot and sticky outside, most of the time we're indoors, where there's air conditioning, and it doesn't feel hot and sticky like that. And then, you're in your car, the same thing. You turn on the air conditioning, and you're not in that hot sticky environment anymore. So I think dry eye... You know, we've really discovered a lot within the past few years on how many people actually have it, and it's way more than we originally thought. Almost everybody has dry eye to some extent, I would say, even kids nowadays. And we've got really great diagnostic tools as well. So a lot of the instrumentation that doctors are using now can evaluate that. So for me, in particular, in my standard workup, no matter what specialty lens you're gonna be in, we're gonna check your tear meniscus height. So that's gonna tell me how much volume of tears you have on your eyeball. I'm gonna check your Meibomian glands. Those are the little oil glands in your eyelids, and we use a special instrument to look at those almost like an X-ray, and that can tell us how healthy they are and if there's any issues there, so we can get on that right away. And we're also gonna do tear break-up, so we're gonna see how fast do your tears evaporate off of your eye. So these are all things that we really didn't do in a standard exam years ago. It wasn't part of a routine thing, but now that we've discovered so many patients have dry eye, now we're starting to do these things kind of automatically because we wanna get to the bottom of it, and we wanna treat this right away. So with almost any disease, early detection is key, and the same goes for dry eye. If you have dry eye, we wanna get on that right away, and we wanna start treatment right away. You don't wanna wait until it gets to that moderate or severe stage. And a lot of times, those are the patients that Dr. Sindt and I are seeing where their dry eye has gotten so bad that the surface of their eye has no tears, and it's so damaged, it's so dried up that we actually have to use a special type of contact lens like a scleral lens to provide like an artificial environment for those people. So dry eye has just become a huge thing in the eye world. And going off of what you said, Dr. Sindt, like little notifications, "Smoking kills" and "Don't rub your eyes," it's like, you know, get checked for dry eye coz you probably have it, and you wanna get on it right away before it gets worse.

[Dr. Sindt] Well, by the time you're putting drops in all the time, it's worse. I mean, that's the point where you need to find out what is the root cause of it and, perhaps, go back in, you know. When you look at the literature on keratoconus, the first sentence of every publication for decades was, "A non-inflammatory eye condition of about 1 in 2,000 people." Every word of that sentence we now know is incorrect. And so there's more and more evidence that keratoconus isn't a non-inflammatory condition. We see elevated levels of these inflammatory markers in the eyes of people with keratoconus. We see elevated levels of the same inflammatory markers of people with dry eye as well. And so dry eye is an inflammatory condition, and keratoconus is an inflammatory condition. And so really preventing and treating is one and the same of treating both of those conditions, it's preventing that what we're gonna call "subclinical," meaning "I can't see it when I just look at you" inflammation on the eye. And so knowing what markers to use, what markers to watch is very helpful in treating both conditions at the same time.

[Naomi] Great! So if you both are willing to touch on cross-linking really quick. We did get a couple of questions, just kind of generally wanting to know a little bit more about what that procedure looks like, what it actually does. And then we also got one, "How many times can you get cross-linking done on an eye?" It sounds like this patient had it done several years ago, and they're thinking about doing it again, potentially.

[Dr. Sindt] Yeah! I mean, if you're gonna have to look... So what cross-linking is, is you take a vitamin B12, riboflavin, a very specialized form of that, that absorbs readily into the cornea, and you put a drop on about every 2 minutes for about half an hour. You know, riboflavin soaks into the cornea. And it stays into the eye, and then it primes, if you will, those collagen fibers that we were talking about. Then, you shine a very specific wavelength of light at that collagen, and it makes those fibers stick together, so they don't pull apart. It does not necessarily make your keratoconus better. The whole procedure prevents it from getting worse or hopefully prevents it from getting worse. Now, if you go back and you keep... It's like if keep rubbing, you're gonna get it again. It's like people who have bariatric surgery. If you go back to your ways of eating, you're gonna gain weight again. So you still can't rub your eye after it, but it prevents it from getting worse, hopefully. In some cases, it can actually flatten the cornea and change and make the vision a little bit better, but I wouldn't promise that to people. But in some cases, that does happen. Now, as far as having the cross-linking done twice, in the United States, we're really new into collagen cross-linking, so we're only a couple years into the FDA approval here in the United States. And so we don't have a ton of cases of re-cross-linking. I don't believe getting cross-linking twice is FDA-approved. I could be wrong on that. Do you know, Dr. Woo?

[Dr. Woo] I don't think it's FDA-approved, but I know that some patients will do it, you know, out of pocket. But most of the time, the surgeons that I work with anyway don't recommend doing it more than once.

[Dr. Sindt] Right! You know in the future, what we're really going to be looking at is some topographically laser-guided cross-linking, where we combine the collagen cross-linking with a topography, with a laser. So basically, we stabilize the cornea and then laser off the high points and the bumps creating a smoother, more stable surface to the eye itself. That's something that people are doing now, but it's very much in sort of the early phases and really considered kind of experimental at the moment. But, you know, there are reports out there of it working quite well. It's definitely not something that's widespread, but that's something to look for in the future.

[Naomi] Interesting!

[Dr. Woo] And it's really important that, what Dr. Sindt said about, for keratoconus patients to understand that cross-linking does not cure your keratoconus. A lot of my patients think that if they get cross-linking, their eye is gonna go back to its original shape, and they're not gonna have to wear any contact lenses or glasses ever again. Their eyes are gonna be perfect. So it's really important just to understand that the whole purpose of it is to kind of stabilize the disease and help prevent it from getting worse or slowing it down dramatically. But just like Dr. Sindt said, if you go back to rubbing your eyes all the time, and you're not making any behavioral changes, you can definitely go back into that same situation, and it can worsen. So it's not like if you get it done, there's no risk of it ever getting worse again. That's absolutely not true. And I think it's really important that patients understand that.

[Naomi] Okay!

[Dr. Sindt] And the other thing is when we're more aggressive with the cross-linking, the younger somebody is the more aggressively "I'm going to recommend cross-linking," really. Once somebody is over 35 or so, our bodies naturally start to cross-link. You know, I kind of joke with my patients, "If you go to pick something up off the floor, and the first thing you do is go, "Ergh," when you go to pick it up, you're probably heavily cross-linked all day." And so, you know, we do see a decrease. Not that you can't progress after 35, but we do see a decrease in progression after that. And so I usually like to watch people over a couple of topographies to see if we have any change in the topography.

[Naomi] So it kinda sounds like you actually answered a question I was just about to ask you. Someone wanted to know if there's any advantage of undergoing cross-linking at an older age. So you're kinda saying about... 30-35 is about the time where you maybe would...

[Dr. Sindt] 35 or 40, somewhere in there.

[Naomi] 35 or 40? Okay, okay! So let's talk about corneal transplants a little bit because... What do you think? Is that sort of the next step from cross-linking? When you know it's time for a corneal transplant, and how long can they typically last for?

[Dr. Woo] That's a great question. So the best person to ask would be your eye doctor. So typically, what will happen is... The great news like Dr. Sindt already mentioned is a lot of these transplants have been avoided now with some of the advancements in specialty contact lenses. So a lot of patients that were getting transplants may not have to get a transplant because we've got such great specialty contact lenses available now. So we're definitely seeing that, but if you do get to the point where maybe your keratoconus has progressed, maybe you have a very dense corneal scar, and, you know, we can't get you to the vision where things are gonna be functional for you, and, of course, every patient is gonna be different, then that's the time to discuss a corneal transplant. If we have done every single thing we can, we've done Dr. Sindt's de-centered optics, and we've done higher-order aberration correction, and we have the perfect fit, we have everything that we can possibly do, and it's still not getting you to the vision that you're really satisfied with, and it has to do, you know, because of the way the cornea is shaped or some scar tissue, that is when we start to have the conversation of, "You know what? I think it's time for a corneal transplant." And like Dr. Sindt said earlier in the presentation, it's really important to realize that getting a corneal transplant is not just a simple thing. It's not cataract surgery that, you know, a lot of your family members may have had, that you may have heard of in the past where you just go in, it's done, you take eye drops for a couple of weeks, and you never worry about it again. Transplants are something that have to be monitored very, very closely. There's always the chance of rejection. A lot of times, patients are on eye drops for life, and a lot of times, they will need another one depending on, you know, the health of the transplant, and a lot of times, there's no way to predict that. And I have a patient right now. She's on her seventh corneal transplant because of the condition that she has. And she has to keep, you know, she goes in and gets another one every couple of years coz they just don't last that long. Other patients, I have patients that have had the same transplant for 30 years, which is a very old transplant. I think in the literature and, Dr. Sindt, you definitely would know more than I do, but I think the literature says like an average corneal transplant life span is between like 15 and 20 years.

[Dr. Sindt] Correct!

[Dr. Woo] And I would say that that is probably true clinically as far as what I see in my office. But that just goes back to like what we were saying before is corneal transplants, this is not just, "Oh, I'm just gonna get a transplant and be done with it. And my vision is gonna be perfect again." You have to realize if you get a transplant, you are most likely, like 99% or 95%, you are gonna need a specialty contact lens to see better. And that's just kind of the way that the cornea is shaped once again. So I think it's just really, really important for patients to realize that transplants... All of us are trying to avoid them, and that's not the goal. The surgeon is not... They don't want to do a transplant if it can be corrected with a specialty contact lens. All of the corneal surgeons I work with, and I'm sure Dr. Sindt, they are always the ones that re-send them to me and say, "Hey! Let's just see what kind of vision potential they can get with a specialty contact lens because they don't wanna have to go down that route. That's not in the best interest for the patient." So it's just really, really important to realize that the risks involved, and you're still gonna have to wear a specialty contact lens afterwards. But in many cases, it is something that you have to have done at some point in some patients.

[Dr. Sindt] Yeah, so the risks include things like early rejection or late term failure of the graft. The endothelium, the inside tissue that pumps the water out of the cornea, can fail. And then, we have to repeat or do a partial thickness transplant under it. You have a risk of glaucoma. Typically, you have to use drops for the rest of your life. Every time you pull a suture, it changes the shape of the eye. So it changes the vision on the eye. I would say it takes most people about a year to recover from a corneal transplant, but it really is a lifetime of maintenance on a corneal transplant. It's amazing! If you really need one, it can be absolutely life-changing. But if you don't need one, we really try not to have you have one.

[Naomi] Very interesting! So kind of along these same lines, and we'll wrap it up here pretty shortly, Dr. Sindt. I know it's getting to be your kiddos bedtimes here pretty soon.

[Dr. Sindt] My kids are in pajamas behind me.

[Naomi] Can you discuss Intacs a little bit? Kind of what they are, and when they would be more of an option.

[Dr. Sindt] So I think Intacs came around before you were even a doctor, Dr. Woo. I mean, they've been around a while now, haven't they? You know, for me Intacs are difficult. When Intacs first came around, scleral lenses weren't very popular then, and I was trying to fit GP lenses over these Intacts, and it was very difficult. And they would often extrude like they'd get a little hole and they'd pop out of the cornea, or they'd get infected. There was a rumor early on that, "Oh, after you get Intacs, you can just wear a soft contact lens." I'm not sure who started this rumor, but I did at one point have to sit my cornea people down and tell them, "Stop telling people that!" And so I never had great luck with it, you know, but now typically, when they put them in, they don't put in two. They just put in one. And that seems to be just as effective. It's easier with these customizable lenses like EyePrint. It's easier to fit contact lenses over them now than it used to be because we don't run the risk of rubbing. You know, when you have plastic, squishy tissue plastic, the two pieces of plastic will rub together and extrude the plastic out of it, which you definitely don't want to have happened. And so with the Intacs, to be fully honest, I would rather try a specialty custom contact lens like EyePrint, where you can move the objects, you can do higher-order aberrations before doing the Intact. The only advantage to really doing the Intact would be a) if you're so mild that you can get out of contact lenses altogether, or b) it can flatten the posterior curve a little bit and get rid of some aberrations. I would say the majority of Intacts that I have worked with by the time they've made it to the university level, to my level, we actually have them explanted and taken out. I don't know what... Dr. Woo, what's your experience?

[Dr. Woo] Yeah, so I have found that... Well, the whole reason and the kind of what they taught us in optometry school is the reason that they did Intacts because they wanted to try to center the cone and minimize the cone, so it's not so steep. So the whole goal was to put these little plastic pieces in the cornea to try to stabilize it and kind of recenter it. But I agree with you in the fact that it makes not only contact lens fitting very difficult and, thank goodness we do have scleral lenses in EyePrint now because it was like near impossible beforehand with so many other contact lens options. But what I have also found is that if the Intacs are kind of more central kind of near their pupil, it really distorts their vision. So sometimes even with the absolute best fitting scleral lens or EyePrint, the vision is still not acceptable because they're getting into that optic zone of where the Intacts were. And I've seen tons of patients that have neovascularization, which is little blood vessels that grow onto the cornea, which, you know, if you talk to any eye doctor, they'll say, "Oh my gosh! That's really bad." And that just makes our lives very difficult moving forward. So I know there are some doctors that still do it. And me, personally, I don't think that'd be my first choice. Dr. Sindt, I have a question for you that comes up for me all the time. What are your thoughts on getting cross-linking and Intacts?

[Dr. Sindt] Well, that is something that does come up, that some people are saying, "Put in the Intact, get cross-linking to secure it in that shape, and then take the Intact out." That concept has been around for a while, quite a while actually. At this point, people have dabbled in it, and it has never really taken off it. You get certain people that get interested in it, and then it wanes away for a while, and then somebody else gets interested in it, and it wanes away for a while. I think that if it were that easy, we would definitely hear a lot more about it. It's an interesting research idea.

[Dr. Woo] Yeah! We'll see what happens.

[Dr. Sindt] Yeah!

[Naomi] Cool! All right. Well, I think it's about time to start wrapping things up. Thank you both again so much for being here tonight! I know I really appreciated it. All the EyePrint appreciates it. I'm sure all of these patients were loving it. So Dr. Woo, Dr. Sindt, thank you again! Thank you, The National Keratoconus Foundation, for supporting us! And please, please, please consider donating to our GoFundMe if you can. You can find that on our Facebook page. There's a link there. Dr. Woo's website is the CLI Nevada, and on our EyePrint website, you can find any certified practitioners on there as well. You can submit more questions that way as well. Yeah, anything else you guys would like to add tonight?

[Dr. Sindt] No just visit Dr. Woo's website, visit the EyePrint website for more information. And, you know, at this level, we're a small group of people, and we really are very passionate about this. And, you know, nationally, the top docs, we all know each other, and we're here to help you. We want to help you. So thank you for joining us tonight!

[Dr. Woo] Yeah! Thanks, EyePrint, for having me! Dr. Sindt and I have been good friends for a long time now, and it's a pleasure to get to lecture with her and educate some of our favorite patients. And like she said, find a doctor that's really passionate about keratoconus and helping you see better because you know, you want a doctor that really gets excited about having that type of patient on their schedule. And I know that Dr. Sindt and myself among some of our other colleagues, you know, this is what we live for, this is what we breathe every day. And I think it's important to find a doctor that really cares, and… Yeah, thanks so much for having me!

[Naomi] Thank you both! Have a great night, everybody, or day wherever you may be!

[Dr. Sindt] Bye!

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