Ep. 14: Beyond the Cure Question: Treatment, Identity, and the Future of Vision Care

Benjamin Thomas: Welcome to the Double Vision podcast. We are identical twin sisters who grew up with a rare retinal condition, which basically means we've had to do a lot of adapting. My name is Janelle and I'm the oldest by four whole minutes. So naturally I get to go first and I'm Joy. A lot of our life has been problem solving a lot of feelings and realizing that we're probably not the only ones navigating this. I work as a therapist and I tend to slow things down and look for what's steady underneath it all. And I'm a writer and creative. have a background in education and I navigate the emotional journey in real time. She does and we balance each other out. Janelle keeps one foot on the ground and Joy keeps things honest and alive. On Double Vision podcast, we talk about the social and emotional experience of being in a body. The stuff we all deal with, identity, belonging and self-trust. We talk about anxiety and overthinking and what it looks like to advocate for yourself and keep going, even when it's hard. We make space for the parts that don't show up on paper, but shape our whole lives. If you've ever felt like you're trying to figure out how to be yourself out loud, you're in the right place. Welcome listeners. This is Joy. And today, as we mentioned in our last episode, we have this special guest to help us continue the conversation. Last week, we talked about the balance of embracing disability identity and self-acceptance alongside hope in the context of vision loss and treatment. And today we're continuing that conversation with a focus on treatment and how research and innovation are shaping the future of vision care. We're joined by Dr. Kirsten Napier-DeVarney. Dr. Kirsten is an optometrist who has practiced low vision rehabilitation for 20 years. She is a vision scientist specializing in vision impairment and mobility. She is currently working as a clinical researcher at Ray Therapeutics, a company developing treatments for retinal diseases. She also brings a unique perspective in that even while working within the healthcare system, she's able to view disability through more than just the medical model, which adds a lot of depth to this conversation. It's rare to find a practitioner who is also a researcher and who approaches her work from such a holistic perspective, addressing adaptive and social emotional needs while also understanding treatment options when they're appropriate. Janelle and I learned a ton from this conversation and we know that you will too. We talk about everything from why people aren't often hearing about clinical trials from their eye doctors to how to find and access studies to the broader world of low vision rehabilitation. Welcome Kirsten. Joy and I are so excited to have you on the podcast today. The three of us first met in high school, so over three decades ago. And at that time, I don't recall you talking about going into eye care. And yet here we are. So I'm curious what led you to becoming an optometrist and working with low vision patients. Well, thank you guys so much for inviting me to be on the podcast. I'm so excited to be here and share my experiences from a different perspective that you guys have with working with people with vision impairment. Yeah, you ask about how it got started. And I knew that I wanted to be in health care when I was in high school. And then when I was in college, I looked into careers a little bit more. And I worked for, not just shadowed, but like I had a job at a few different offices for both optometrists and then also a gynecologist who did fertility specialty stuff. And so I kind of just learned a little bit more about different aspects of healthcare and decided that optometry was something that was interesting to me. I had always worn glasses. And so I had been going to the eye doctor since I was little, which is pretty common for optometrists is that they wore glasses and knew that the optometrist was. a nice person who didn't poke with needles that much and stuff. So then when I went into optometry, I really didn't even know that much about low vision. And I knew that you two had a vision impairment, but as teenager, it really didn't mean anything to me that you guys were my friends. And the biggest thing that I remember that made you unique is that you didn't drive. And that was it. That's the only thing that stood out to me. until I learned more about different areas of optometry and I was like, ⁓ retinitis pigmentosa, I think that's what Joy and Janelle have. So it was in optometry school that I decided low vision was actually pretty interesting to me, that it was a different way of working with patients in their eyes and instead of trying to provide a new glasses prescription or manage an eye infection, low vision was much more of a deeper thing where you really got to know patients on a deeper level and trying to solve problems that are a little bit sometimes unique, different kinds of problems that maybe we weren't used to dealing with with patients who didn't have a vision impairment, needing to be able to see detailed things without just a regular pair of glasses. That was interesting to me. Yeah, it is really interesting. And I'm also curious, over the last few decades of becoming an optometrist and working in low vision healthcare. Where has that led you? What are you currently doing? I have been an optometrist now for over 20 years. When I started, I was doing a little bit of low vision in the beginning, and I'm not sure how much your listeners know about low vision rehab, so I'm happy to share more information about it from the provider perspective. I have done low vision rehab a little bit over the whole 20 years. I have worked in all sorts of different types of eye care clinics. have spent a number of years working at VA clinics with veterans. I've worked in private practices. I spent a long time, 12 years of my career, I was working at a university where we taught optometrists. So I would see patients in the clinic with interns and sometimes residents. And then ⁓ for the past four years, I actually ⁓ have been getting a PhD in vision science. So vision science is It's its own unique field, but it's related to neuroscience. So what I have been doing for my PhD is studying how people with vision impairment walk. We have focused my project mostly on people with central vision impairment from things like macular degeneration or Stargardt's disease. But I've also done some work with people with other types of vision impairment. So that's what I've been doing for the past four years and seeing patients in low vision clinics as well. As I'm wrapping up my PhD and graduating, I've also started working at a company that does treatments for people with genetic eye diseases. I would love, I mean, actually to back up for a minute and have you tell our listeners a little bit about low vision rehab, because I do think it's something that a lot of people aren't aware exists. And I think probably even before you went into optometry, I would imagine that you were just like, ⁓ I'm going to give people glasses and make their eyes better that you probably didn't realize that there are a significant amount of people for which there are no glasses to fix their vision. I think that that's really true. mean, when I went into, I started optometry school and I didn't know what low vision rehab was. I was learning about low vision and what it is. know, we in optometry, in the curriculum, you don't really learn a lot about low vision rehabilitation until towards the end because That's a really good natural progression. You need to learn about all of the basics of eye care and eye diseases and their implications to really understand, well, how are those going to impact somebody? Like if there's an eye disease that there is no treatment for, which is so common, there are a lot of them that are both genetic and non-genetic that you really can't recover from, you know, bacterial conjunctivitis that you get some antibiotics and then you're better and your vision is never affected from it. there's a lot of conditions that do permanently affect someone's either vision or their visual functioning in other ways. So once I learned about that, I really wanted to kind of get involved with it. And low vision rehabilitation is a very broad field for being such a subspecialty area of healthcare in general and also of eye care. So in low vision rehabilitation, what we do, is work with people that have some kind of a permanent vision problem. So, you this isn't just, need a new pair of glasses because my myopia is a little bit worse, but this is, these are conditions where the glasses aren't going to bring someone's vision back to like the 2020 standard that we think about. For some people, that means their vision impairment is that they have a hard time seeing straight ahead in their central vision. So this is conditions like macular degeneration and a lot of other conditions that affect older adults, but there are some that affect younger people too, like albinism can affect your central vision ⁓ and other conditions as well. When it affects someone's central vision, that means that they might have a hard time reading print or seeing faces or doing other details, but their peripheral vision is still retained. So they're able to kind of recognize where they are in space and see things moving. Generally their mobility is not that affected though that is my like area of interest and because it is a little bit impacted. And so we've been trying to figure out how. And then other people with vision impairment, like with retinitis pigmentosa have it where it affects your side vision. So that makes it more difficult to recognize like what's around you and see details in the peripheral vision. So sometimes mobility can be a bigger issue because if, especially if your visual field is affected on the bottom part of your vision, the inferior area, it can make it that it's hard to see what's on the ground without changing your head position a lot or scanning, oftentimes other tools and techniques are needed. But with peripheral vision conditions, ⁓ a lot of times, but not always, central vision is retained for sometimes quite a while. And as you guys know, and some of your other listeners that might have retinitis pigmentosa know that there's a huge variation in how people are affected. I've had people that have lost all of their vision completely from retinitis pigmentosa at like age 12, I think is the youngest. And then ⁓ I have patients in their 90s with RP that also that have some vision. They're able to see letters and read and sometimes even move around pretty well without any devices. So there's a huge range of how people are affected. So I think I'm getting two in the... No, I've heard it described as like retinitis pigmentosa is like saying flower. There are tulips, there are daffodils, there's so many different genetic variations when it comes to RP. And so it can look really different. This is Janelle, I work with clients with all different types of vision loss. I mean, before I started doing vision rehab counseling, I had no idea that there were so many different ways to lose vision. And so... I think it's interesting even within the same genetic condition, it can look so different. Yeah, it is really interesting in that. When I got involved with low vision, that was one of the things that really intrigued me of there are so many different ways to lose your vision. And retinitis pigmentosa is a little bit more exceptional in that it has a huge number of variations. And you're right, Janelle, there are so many genes that are responsible for RP. that if you have any kind of like, you know, some people have multiple genes that are affected. Some people have these, you know, different combinations and it can make the way that the disease progresses totally different. And there's other conditions that are much more expected. So ⁓ we're doing, and my company treatment on Stargardt's disease. And so when we think about a Stargardt's patient coming, it's like, okay, well, it's pretty predictable. We're going to expect. that these are going to be about their levels of vision and about the problems that they're having. Where with RP, we have patients that come in and don't qualify for the study on both extremes. Either their vision is too good or it's too poor. And that's a huge range of vision that can be affected from RP. Yeah. Well, tell us a bit about Ray Therapeutics, the company that you're at now and some of the clinical trials that you're... involved in. We are an optogenetics company, which means that we are working on genetic diseases that affect the eye. Before I talk about Ray, I might do a little bit of background because I think that there might be some of your listeners that have no idea what optogenetics is at all and some that are like deeply involved in, you know, learning about it and knowing, you know, who are all the players are. The genetic disease world, we have known about genetic diseases for so, so, so long, you know, centuries. And with the scientific advancements in the last like maybe 20 to 50 years, we've learned so much more about genetic diseases. And now, you know, we can map so many genetic diseases that we couldn't even, you know, 20 years ago. Yet still, we still don't even know all of them. I still have patients with RP and I'll run a genetic test on them and it comes back undeterminate variables. And it's like the genes just haven't been found for the specific type of RP that this person has. There still is a lot to go in the scientific community with regards to genetic diseases. So genetic diseases have been studied for treatments for a really long time. But back in 2017, in the United States, the very first gene therapy was approved by the FDA. And it was for an eye disease, a variant of retinitis pigmentosa. And this genetic treatment ⁓ is very specific for a specific gene. So in order to be eligible for the treatment, you have to have a specific gene variant that causes RP. But that's very specific. So unless if you don't have RP, but you don't have that specific gene, then there's nothing available for you. So since that treatment was made available in 2017, there's about a dozen other genetic treatments that have come on the market and have been approved by the FDA. but still only the one is for an eye disease. The rest are for other conditions, certain types of cancers and hemophilia and things like that. So there's still a lot of work and interest in finding treatments for other genetic eye diseases that have genes other than the RPE65 that there's a treatment available for. In the space right now, there's a lot of different companies that are working on it in different ways. And the emphasis for a lot of companies nowadays is to get away from treating conditions from a very specific gene and looking at more what are the commonalities of the condition and how can we treat the disease process without actually trying to change the genetic material. That's one of the ways that Ray is doing it. So it's called gene agnostic, which means it doesn't care what your gene is. For the work that we're doing at Ray Therapeutics, We have two trials going on right now. Well, one is kind of in between phases and another one is just now starting. So we are just starting to enroll patients in that one. So the first one that we're between phase one and phase two studies is for retinitis pigmentosa. We've also included choroideremia in that one because there are some commonalities in how the disease progresses. And then the other disease process that we are just starting a treatment for is for Stargardt's disease. At RAY, what, you know, these, treatments currently, as far as I understand, even the other companies that are doing work on genetic eye diseases are all currently doing intravitreal injections, which means that it's a medication that's injected into the eye. The vitreous is ⁓ a large part of the eye. It's like a jelly that the medicine would go into to then work in the retina, which is the area that's impacted by retinitis, pigmentosa, as well as stargardt. So there's two different disease processes. That's what the medication does. And then the part, the role that I have with the company is looking at the ⁓ outcomes. So what happens to people's, know, vision, movement, quality of life, things like that after they get the treatment. That's my role. Probably kind of exciting to be able to see like the practicality of, gosh, is this making an impact on someone's life? It really is. I mean, it's super exciting and it's a really fun place to be right now and exciting because we're seeing how we can change something for someone. And right now the treatments like the current treatment that is on the market, it's called Luxterna. That's the name of the medication that's used for and the gene is RPE65, which is people that have retinitis pigmentosa or a Leber's congenital amaurosis. Those are the two conditions that would have that gene variant. The treatments right now are, they're not really considered a cure because it's not taking the impairment away so that the, you know, the vision impairment is no longer there. Really what the treatments are doing at this point, the scientific advancements are at the point that they're doing the goal is to have some improvement in function. It really needs to be a functional improvement because sure we can do a treatment and say, look at the cells in your eye have changed. But if it doesn't impact you in any way, then who cares? Why it doesn't really matter. So the goal is really to have some functional improvement. And so that's part of what we're trying to figure out is what are the ways to measure the functional improvement because it has to be standardized. The FDA has to see that it's going to be something important and valid. And so that's a pretty difficult thing to do, especially like we talked about with RP, that there's so much variation in it. It's sometimes it's hard to say, you well, this person already had good central vision. So. how are going to show improvement if they started with, you know, 2020 vision versus this person is light perception. Well, how are we going to show improvement if their light perception is that they can see more light and it's better. So trying to find that little space where we know that someone is actually functionally improving is, it's interesting. It's fun. Yeah. And this is Joy. And I'm wondering, first of all, I'm excited that there's some non-gene specific studies because that has been Janelle and I have experienced in the past is like, okay, it's been for this RPE65, which is kind of one of the most common genes, but we have the CRB1. And so that one is less common and is the early onset. Although I see on all our paperwork from when we were little, it also says labors. I don't know if they just use that term loosely or what, but okay. Because we haven't been, we've never been contacted by anyone, even though supposedly we're in this big database from when we were little having, you know, Dr. Gerald Fishman, who is a renowned researcher. And we were told we would be contacted. Each of our family members, you know, put in their, ⁓ they got blood samples and everything so that we could be part of some studies. And unfortunately, we've never been contacted. And until you were the one who told us about. these studies, which we're now looking into. And it's just interesting that even though I go to an ophthalmologist and they don't really seem to know anything about any trials or giving me any information. So I'm assuming that maybe most people just need to be proactive in finding these. How do people find information about something they might be a candidate for? Yeah, that's a question. I think I mean, there's a lot of different points that you just brought up, but to get started, why does your eye doctor not tell you about it? First of all, it's hard to pinpoint who is doing what work. And I'm gonna talk about how you can pinpoint it, but even for me, so in preparing for this podcast, I did my own research. I asked my colleagues at Ray, who else is out there? And we don't even fully know. And some of it is because unless you start a clinical trial, A lot of this work starts in a lab at a university somewhere and nobody's talking about it because they're, you know, they might be working on mice or monkeys or, you know, some other, and it just test tubes trying to find information. So you don't even really know what they're working on until they start to provide information. And sometimes it would be some amazing treatment out there, but if the people, scientists that are working on it, aren't getting in touch with the right people, it might go nowhere. So. A lot of it is just making sure that people know about things. And so, you your ophthalmologist may not know about it because nobody's talking to them. Nobody is coming to them and saying, hey, we are looking for research subjects for this new treatment. And some of that is because it's really hard to access. Doctors in general, healthcare providers in general, are really, really busy nowadays and usually are overloaded with too many patients and too much paperwork and too much bureaucracy that it's hard to add another thing to it. And I will tell you from my own personal experience, I was running my own PhD study, meeting my subjects, and I would go in and see my patient and have a list of five things I have to do. I need to look into, find a mental health resource for them in their county. I need to, where's the closest patient mobility, do they come to them? Are they going to have to travel? You know, all of these things that I have to do. And then the patient would leave and I'd say, shoot, forgot to ask them to be a participant in my study. do understand from the provider's perspective, you know, adding another thing onto it is, sometimes is too much of a burden and they just can't do it. There's a lot of reasons that you're not hearing about it. So that's why coming on to like your podcast and talking about it sometimes is a really great way to get the word out and helping, you know, this is another thing that we can talk about today or maybe in the future is how people with any kind of impairment, but particularly a vision impairment, like how can you find other people? Like how do you find other people that might be knowing about this information? Because I do know a number of people with a vision impairment that they are exploring every single clinical trial that they can find. And so they're good resources. They sometimes have more information than I do because they know, like I had somebody at Ray recently, who she told me about what other studies were, you what they were doing and what their criteria was that I didn't know, because she's spending a lot of time looking into it. So that's number one why you may not have heard about it, any of these studies from your eye doctor. This is Janelle. I guess I just want to kind of add to that is just working in health care myself. I just want to acknowledge that our health care system is really lacking when it comes to coordinated care and any kind of integrated care. And as a Provider, find that extremely frustrating. And then as a patient, I find it incredibly frustrating, especially because you talked earlier about how the range can be quite different from how much central vision someone has. And up until about three years ago, I still had quite a bit of usable central vision. And when my left eye started to go, I was seeing ⁓ a doctor at OHSU, at the KCI Institute in Portland. And I would drive. You know, five hours I would travel to get to that appointment and go through a whole day of testing and then get to meet with my provider for about 10 minutes at the end. And when I asked him, I said, gosh, my left eye is really going. He said, yeah, and your right eye is probably not too far behind. And I said, so what does that mean? And he says, well, it probably means it's about time to get you into some clinical trials. Well, I felt hopeful for that. And then over three years, not only did I never hear from OHSU about any clinical trials, but then I was switched to a different provider. And when I expressed some frustration at my last appointment, I got some pushback from her as to like, well, we're doing the best we can. so I guess ⁓ I'm trying to balance all that. But I think as a patient who has a degenerative eye condition and I know that there are some clinical trials happening and there's some movement, it's really kind of hard to be patient. Yeah, well, and especially because this is Joy. What you were mentioning about that, like, RPE65, I think that study, from my understanding, and correct me if I'm wrong, Kirsten, that it's not just to help improve functional vision a little bit, but also to prevent further degeneration, some of these studies, right? So getting into, like, for people like Janelle and I who are quickly losing vision at this point is probably a timely thing. Yeah, I agree. I mean, I think it's really... and tough because I hear your perspective and I hear it from patients all the time. you know, we'll run, I run the genetic tests on people now and since RPE 65, so I'm not sure if people are aware of this, but with the advent of Luxterna for RPE 65, this is my interpretation of this. So this is, I am not speaking on behalf of Ray or anyone else. This is just my interpretation of how it's gone. But since that came out, there's a lot of, renewed interest in genetic diseases. And like I said, now there's genetic disease, a variety of different genetic diseases that have a treatment that's FDA approved, other than vision diseases. Because that, like there's kind of some momentum that's happening. For a while, this is still the case though, they've kind of reined things in a little bit, but for a while we were able to get genetic testing for free for like almost anybody that had anything that could be related to a retinal disease. And sometimes that really weren't that related to a retinal disease. So it was easy to run a free panel if you had a potentially genetic eye disease to be able to get the information. And the reason that that was happening is because some organizations, particularly the Foundation Fighting Blindness, had decided to support the genetic testing because genetic testing can be expensive. So they decided to financially support genetic testing so that A database of people with the genetic diseases that are being studied could be created and maintained. And that's probably what you guys were told when you were kids. I didn't know that they were doing it back then that they had started creating this database. I'm not surprised that they did, but I didn't know about it. I really didn't know about any kind of genetic database for genetic diseases until Luxturna came out. So because that's when it became available, because before that, If I had someone who had a potentially genetic disease, I'd look at their eye and say, well, it looks like you have retinitis pigmentosa. You could get genetic testing done to confirm it, but I don't know where you're going to go to get the testing. I've heard that if you go to like, know, in Southern California, I've heard that if you go to UCLA, they do it, but I think it's thousands of dollars. I'm not really sure. So, you know, was like there wasn't a lot of information out there. It was hard to get the information, hard to find. know, ways to get people scheduled for genetic testing. So it had been, you know, really difficult. But now that the testing, the foundation fighting blindness has supported it, the clinics are in every low vision doctors office. They are probably not in most eye doctor offices. You have to specifically find someone that is regularly seeing people with inherited retinal diseases. So low vision doctors and then retina specialists would be the main ones. If you're a listener and you know that you have an inherited retinal disease and you have not had genetic testing, you absolutely should ask for it. Should ask your doctor or you can contact Foundation Fighting Blindness and they can help you. I know that they have a database of all the providers that are doing testing across the US because we have to be coordinated in their system. If you're interested, you can get testing and know what your gene is. And the next step is, so you know what your gene is, like Joy and Janelle, you guys have known what your gene is for what now, like 30 plus years, and then you have to just wait until they contact you. I truly don't know how they're using the database. So what one can do is tell you what you can do. Like if you know what your condition is, and even if you know what your gene is, you can go to clinicaltrials.gov. Joy and Janelle, have you guys explored clinicaltrials.gov at all? No, I haven't. was signed up with Foundation Fighting Blindness, so I guess I was under the impression that they would contact me. But I've been signed up with them for years, and I get these sort of automatic emails that say, like, retinal tracker, but there's never any actual, like, concrete information, like what you emailed us about ray therapeutics and the clinical trials going on. like... why hasn't someone sent this to me before? I would have wanted to know about this two years ago. And yet, this is Joy. I know you mentioned there's people out there who it's almost like a full-time job when they research all of these different things. But it's really hard when you have careers and kids and all of the different things. And you're also just trying to balance. I know we're going to go into this a little bit too, but just the acceptance piece and living well with low vision and not acting like I know the whole medical model we've talked about different. models of disability on this podcast a bit, but the medical model really being that this is something that has to be cured, whereas there's kind of the social model of, ⁓ which really says that it's society and kind of the inaccessibility of society that is more of the issue. And so these are obviously conflicting views in a way, and we kind of vacillate because of our careers and the work that we've done between them. And so it's hard to sometimes make that a whole focus and have all find the time to even look into these. it really sends you oftentimes down a lot of down rabbit trials. know Janelle, you were sharing that even just the exhaustion and kind of like, I don't know, like negative feelings that that can sometimes bring up even chasing down some of these trials and things that that can bring up. The most simple way to look into things for people to look into it themselves, for you guys to look into it is to go to clinical trials.gov. It's a federal website and it is the database for every single registered clinical trial in the US. And also they have some international clinical trials as well. In the United States, particularly if you are wanting to try a drug or a device on humans, you know, like for Ray Therapeutics, we have an intravitreal injection. In order to be able to start a study on it with actual people, you have to register it through clinicaltrials.gov. Every study is registered here. There are, don't even know, doesn't say you have to like start the search to get some numbers, but I'll just tell you a few numbers. So when I went on clinical trials.gov, I typed in eye disease and I got six, this is yesterday when I did this, I got 16,312 results. So there are 16,000 clinical trials that say something about eye disease. When I typed in retinitis pigmentosa, I got 313 results. And then when I typed in a few different specific genes for RP, I got between one and eight results. I am curious, what would you say is the most promising treatment? don't know if you, you you talked about Luxterna and then of course you work for Ray. So I don't know if you feel obligated to say, oh, the one that we're working on, but do you have kind of a hope in some of these that you're like this, I think this direction makes the most sense right now or is the most promising? It's really hard to say because there's so much that's happening in this space. It sort of feels like some of it is like just throwing paint on a wall that there's so many different ways that you can approach. I'm thinking just specifically for like RP or other inherited retinal diseases is the overall term for a lot of conditions, including retinitis pigmentosa. So there's so many different ways to look at it that what Ray is doing and what a lot of other companies are doing is starting to look at like, well, what is the visual process? So there's, called the visual cycle of, know, when light comes in the eye, it does all these things with different cells in the eye, and then it goes to the brain. And then we process it and say that, ⁓ I see a tree or, nope, that is my, you know, my friend. The visual pathway and looking at the pathway, I think it's probably the smart way of doing it as opposed to trying to, you know, go in and repair specific genes. That, it seems like right now is probably a more bigger approach to managing some of the diseases that are out there. But I do have to say that, you know, the treatments that are currently being explored for inherited retinal diseases, I don't think any of them, to my knowledge, none of them are at the point of like curing it or even completely stopping progression. Really, the goal is improving like, you know, how can we even just start to improve visual function because we know that these progressive diseases, they, know, the deterioration can get worse and worse and worse. And for some people it can, you can lose most of or all of your vision. So the goal is really right now to try to, you know, stop progression so that you just hold where you are right now without getting worse, which is, it still would be a huge, amazing thing to have medication that could do that. or to even restore vision, even if it's just small levels of restoration, that's what the goal is right now. And I think that once small areas can be found and managed, that can then grow and blossom and more people will start to look at it when they have learned that this treatment can do this with this part of the visual cycle, then maybe people can expand on it and find other treatments. So I think that all of it is really exciting right now. Unfortunately, if you're like, ⁓ I found this study, I'm going to explore it, it doesn't mean that you're probably going to get a treatment and then have your vision restored within a year. That's still is just not where things are at. Really just the more people that participate, the more science can learn and grow for the future. So it may not be that your vision is restored to how it was when you were 10. you might have a little bit of vision restoration from a treatment that that will lead organizations to learn more and be able to do more and better in the future. What about potential side effects? Are you really aware of what some of these potential side effects are? Because as you know, I'm a healthy individual other than having vision loss. So when I look at participating in a clinical trial, am I willing to risk my overall health for a little bit of visual? functionality improvement? Yeah, that's a really good question. The kind of a nice thing about the way that the treatments are going for eye diseases at this point, at least for the most part, this is not 100%, but most treatments are doing intravitreal injections, which I mentioned before is an injection into the eye. Intravitreal injections themselves have been used for, you know, decades for various different conditions. So treating, you know, infections that people have had in the eye The treatment for macular degeneration that has been around for over 20 years now is an intravitreal injection. So the actual method of doing the treatments is very well known. So that's not a surprise. And the nice thing about it is because it's an intravitreal injection, it's not like a pill that you're taking that's going to your whole body or even a shot that is going to every cell in your body. The treatment is going very specifically to the eye. The eye is a very unique organ of the body. It's called an end organ and it is very protected. So that's why it's a really nice organ to treat is because it's very unlikely that the treatment will go to the rest of your body. So yes, there are still some risks with an introvertrial injection, but they're really, really, really uncommon to happen. They're very well documented, well known. And all of the studies that are listed on the clinical trials.gov, they all have to go through a lot of different like safety procedures to make sure that they're safe. And the very first phase, so I don't know if you guys have heard of the different phases of clinical trials, there's phase one, two, and three. So phase one is a small group of people where the treatment is given and the goal is not to find out if this treatment is going to work. It's really to make sure that the treatment is not harmful. And so that's what phase one is, is there any harm? And with intravitreal injections, even with the different medications, the chances of having a side effect are pretty low and pretty rare. All right. So this is Joy. And as we wrap up, I just wanted to ask you, Kirsten, if you have any thoughts on balancing the hope for treatment and just the everyday living and living a very full life. That's something that's really important to us. I know that there are influencers such as Molly Burke, who is completely blind from retinitis pigmentosa, who has said that she wouldn't even want a treatment and that she doesn't see herself as a disease to be cured. And she has taken a lot of flock for that of people kind of criticizing her view on not. wanting a treatment if there was one. And she said she could always change her mind, of course. I resonate with both just because I have to say it's so vulnerable to even seek the treatment. Like I kind of got my hopes up, you know, talking to the one study. And then when I realized, ⁓ gosh, I don't really meet the criteria. I found myself feeling really emotional and kind of down. Whereas just the day before I was really into just how do I adapt and just living my life. And I think it's can be hard. can feel a lot of like judgment for myself and I guess the systems involved too because I feel I am complete and I am living a really good adaptive life and at the same time I think it brings up when I start to think ⁓ my gosh could I see better. this feeling of desire and want, and it's that feeling of want that sometimes can cause a lot of suffering. So not to get too existential here, but curious how you handle that with your patients and what you've noticed in working with people over the years regarding that. You know, I hear from people all sorts of different perspectives about it. And you're right, I follow Molly Burke as well. And I have patients too that say that tell me that, you know, part of their identity is having this vision impairment and that's who they are. They don't want a treatment for it. That's, you know, this is how they live their life. This is how they handle things and that this is just how it is. And so I think that I always want to make sure that I respect what other people want. And I have had patients tell me, no, I do not want that treatment. I, you know, try to give a balanced approach of like, this is the benefits of it. But if this is your perspective, then that's fine. You know, ultimately, you know, people have to make their own decisions about how they're going to live their life and what kind of health care they want. For people that feel that there's something, I don't know, feel the loss of the vision impairment, you know, I think that I want to make sure that people know that if you do feel that, that that is really normal. And that's where if it's something that has become really burdensome to you and it's affecting your day-to-day life, then finding somebody to talk to about it is really important. And I try to be able to talk to my patients when there's emotional aspects of vision loss. but I'm not trained in the mental health area. So this is where I try to refer to people like Janelle to be able to handle some of the emotional aspects of it. ⁓ In my work, when I'm working with people, the biggest thing that I want to work with somebody on is to help them with the independence that works for them. What is the level of independence that you are striving for and what are you struggling with to get there? And that's really different depending on the patient that I'm working with. The vast majority of people that I see with low vision are elderly people that have macular degeneration. That's the most common is maybe an 80 year old woman with macular degeneration. So the level of independence that that person is experiencing and expecting is oftentimes dramatically different than a 30 year old with RP who's about to get married. and start a family and manage life at work. Handling each patient's different needs and perspectives is something that I do. But in all cases, sometimes the most important thing I can do is just encourage them. You can do hard things. If you're having trouble with it, you have to just keep trying. Either keep trying on your own, keep trying to find the person that can help you or that can work with you or that has an idea. you know, it's not always me. try to be that person for my patients, but sometimes I'm not experiencing it. I don't have a vision impairment myself. So I, I can't always, ⁓ you know, truly empathize with my patients. So sometimes I need to help them find that person that can. And, you know, so I think that for listeners that are struggling with their vision impairment, think that finding the, the, people that can, you know, work with you on it is just really important. You know, sometimes you need the person that's got tools and that's where a low vision optometrist will come in hand. Sometimes it is the person that will, you know, listen to your struggles and that's where a social worker or someone in the mental health space will come in. Sometimes it's like a friend that can build you up and, know, just remind you that you're amazing and you're awesome. Sometimes it's someone who's inspirational that you can look at and say, wow, they have done really cool things. and they have a vision impairment and they're doing it. And so, you know, maybe those are the people that you need to look to. You know, sometimes it's trouble, like hard to just find those people. have a patient who is about 19 or 20 and he is on social media all the time. So he wants to be an influencer, but he doesn't know anyone else with a vision impairment. He only knows the people on the internet that have a vision impairment. And I'm like, you need to find people in real life. Like let's help you find people in real life that you can talk to or at least help you get connected with some of these people. So, you sometimes just finding other people, whether they're virtual or in person is really important too. Kirsten, you're like a unicorn in as far as low vision doctors, the fact that you think of all these things that you know words, I know we've communicated about this before, like ableism and things like that. I mean, that's very rare to have somebody who has your knowledge. and your patients are really fortunate to have you. And we're fortunate to have had you as a guest today. Oh, well, thank you. Well, hopefully you can continue to educate other providers, especially eye care specialists. And I really appreciate that you mentioned a multidisciplinary approach that we can call on our occupational therapists, our O &M specialists, our friends, our family, our eye care specialists. This can be a team approach. And what Joy and I want to continue to remind listeners is that you're not alone. There are resources out there. There are people out there that want to listen and want to support you. And we'll continue to bring those people onto our podcast to share about the different opportunities for social connection and for learning more about how to live a really full life with vision loss. Thank you so much, Kirsten. We'd love to have you back on the podcast in the future to talk more about vision rehabilitation and any updates to clinical trials. Yeah, I would love to do that. Yeah, maybe we'll have like an Ask the Eye Doctor special where we revisit this quite often. So see, we're committing you to a long-term relationship with double vision. You had no idea what you were getting into. I love it. I want to be a regular. And we didn't even prepare a game for you so you don't have to suffer at the end today. But I want to do the game! Twin Telepathy? Yes. Okay, okay. I will think of the word. This is Joy. I have an idea. Okay, this is Janelle. Naperville? One, two, three. North! That's the high school we all went to. Joy, do you want to do one word? Yes, I will do RP. One, two, three. Disease? Sorry, that was not a good one. Okay, Kirsten, you think of one. I. One, two, three. Care. you guys, does that mean you're more optimistic and I'm pessimistic because I thought of disease and you thought of. Well, thanks again. Thank you guys for having me. Thanks for listening to Double Vision Podcast. The stories and perspectives shared here reflect our own lived experiences with blindness and disability and do not represent all blind or disabled people. This podcast is for conversation and reflection only and is not intended as therapy or replacement for professional mental health care. If you're enjoying the show, please rate and review wherever you listen. You can also leave us a voice message at 949-414- 8336 or email MAIL at doublevisionblog.com with any suggestions for future episodes or comments. Special thanks to our production team, TLS Productions and Benjamin J. Thomas.