Low Vision Insights: Conversation with Dr. David Lewerenz Description of graphical content is included between Description Start and Description End. Transcript Start [ Music ] [Title start:] Low Vision Insights A conversation with Dr. David Lewerenz, OD, FAAO, Assistant Professor, Department of Ophthalmology, University of Colorado School of Medicine Cindy Bachofer: I'm pleased to have Dr. David Lewerenz in the studio this morning. [Title end:] Following our Low Vision Conference this year that focused on progressive vision loss including degenerative medical conditions. And we had parents at the conference that spoke about the very difficult journey that starts when they hear the news in the doctor's office that their child has a progressive vision loss. And we are here this morning to talk about some of those questions that parents may have. I'm first going to let Dr. Lewerenz introduce himself and his role at -- as Assistant Professor at the University of Colorado School of Medicine and as an optometrist. Dr. David Lewerenz: Thank you, Cindy. Congratulations on a really great conference. I know that from comments I heard from both the staff and the parents that were there, I think it was a very successful event. So thank-- congratulations on that. Yes, so I have a long background in the low vision field. I've been an optometrist for almost 40 years and I've taught-- been in private practice. I taught at a college of optometry in Oklahoma and currently, I'm Assistant Professor of Ophthalmology at the School of Medicine of the University of Colorado where I provide low vision services there. Bachofer: How do you begin the conversation with a family when you have to give them the news that their child has a progressive vision eye condition? Lewerenz: Well, as the low vision specialist, I'm usually not the first person to give the family the news. They've usually gotten the news from their... ophthalmological specialist, or someone like that. So, I'm often not the first person to give them that news, but sometimes I am, and in many cases, the patient still has a lot of questions when they get to me. Because either there just wasn't time to explore all their questions, when they did get the news, with their specialist, or they were in kind of... a state of... shock that they didn't really-- don't have very good memory of what happened. So, they frequently do have a lot of questions when they come to see me, and so I just try to answer them as best I can. And I usually begin by just asking them, you know, what is your understanding about what will happen with your child's vision in the future? And do you have any questions or concerns about that that you'd like to talk about? So, that's how I usually initiate that conversation, and... if-- and then sometimes I'll ask some more direct questions about their understanding of the condition, and we'll take it from there. And many times, because the low vision evaluation is-- you know, we schedule a lot of time for it and there's a lot of time for talking-- they're often very grateful for that time, and very often tell me that at that end. That they're- they're really thankful that somebody... really spent a lot of time explaining things to them. So, we do talk about it quite a bit at that first visit, but they usually have some idea of what's going on before they get to me. Bachofer: And I suspect, then, that you have continuing appointments with the family. So, you get to know them, the more of that information-- their concerns come out as they get to know you. Lewerenz: That's true. It depends on the situation, and what our treatment plan is. And it depends on how far away they live. You know, where I practice, we see some people who have come quite a ways to see us, and it's not always feasible to have them back for a lot of follow ups. But frequently, we do see them for two or three visits before it's all over, and so, yes, we do establish some rapport, and have a relationship with them by the time it's over. Bachofer: Families may ask about new research they've seen on the internet. I'll bet this frequently comes up, that they were browsing and saw this new treatment and they're certain that it's going to be the cure, what their child needs. What criteria do you pass onto parents that... gives good... background for medical research? Lewerenz: Well, first of all I think that the proposed therapy has to have some sort of mechanism of action that makes sense. And it has to be provided by a provider that has a good reputation. Also in the whole evidence-based medicine field, there are-- there's kind of a hierarchy of evidence. There are certain kinds of studies that carry more weight than others based on the study design. And... again, I would sometimes refer back to their ophthalmological specialist, their glaucoma specialist, their retinal specialist, and advise the parents to... check with them, before you make any sort of decision. And you're exactly right. I have had patients who have jumped at the opportunity. I've had patients that have gone to... China for stem cell therapy, that kind of thing. And... given the state of stem cell therapy, I think it's probably unlikely that they actually received a beneficial treatment. And so, I always advise, if I can-- if they ask me first before they... jump and go, I always advise them, you know, take a step back. Think about it and make sure this is a reputable place. Check with your ophthalmological specialist, before you make any decisions. But... you know, we live in a really fast paced world where technological advancements are coming very, very rapidly. And so, people expect rapid change. And I... still... emphasize with patients that they need to make a... commitment to the rehabilitation approach. Because, for example, take- take the- take the case of... say a 15-year-old high school student with a progressive eye condition in say, the year 2000. Well, that was the year that Lancelot, the Briard dog, was given gene treatment for the doggie version of Lebers Congenital Amaurosis. And had- had a demonstrable improvement in... visual functioning. And if that 15-year-old, at the time, would have said well, I'm going to forego the rehabilitation approach, and put all of my faith in a technological cure for my- for my condition; you know, that person would be 32 years old by now. And we still don't have treatment for humans with... gene therapy or stem cells... that is available outside of the limited realm of... of clinical trials. And even within those clinical trials, you know, they're showing promise, and I look very-- I look forward, very much, to what those things will- will... will bare, at some point. But they're-- even at this point, they're not making miraculous improvements in people's vision. They're making-- they're stabilizing it. They're making it small improvements, perhaps. But... I... try to emphasize that... that you can't put your life on hold, and just wait for a technological advancement to cure your condition within a year or two, because that's just highly unlikely. Bachofer: Yeah. Lewerenz: And... life has to be lived between now and that point. Bachofer: That's what we kept hearing at the conference, yesterday, again and again. You've got to live your life. Yeah. Yeah. What have you found to be an effective process for linking families, when they have learned that their child has a progressive vision loss? Lewerenz: Well, first of all I think it's really important that... there is some kind of communication that families can have with other families that are experiencing similar situations. It's important for the family, and it's important for the student to be able to have that- that peer group and those people to talk with. If the student is attending a school for the blind, it kind of happens automatically with all the different opportunities for... for interaction with other families and other students. But... in the case where they're attending their... regular public school or private school, and not at a school for the blind, I encourage them to... participate in... summer camps and summer activities that might be held at their school for the blind, link with other families in their area, and to link up with... with online... opportunities. We learned yesterday, when talking with some families, about some connections that were made that way through... blogs of people who... are visually impaired and write about it. And connections that were made that way and support groups that are available in chat lines, and so forth, online. So, there are online resources. There's-- in my opinion, there's nothing that really substitutes for a face-to-face interaction. And so, I certainly encourage that. It's difficult to... find that sometime, if you live in a remote place, where you might be, you know, the only visually impaired student in your classroom, and maybe, even in the whole school. And so, it... can be a challenge, but I try to strategize with the parents to find ways that that can be accomplished. Bachofer: And I know... the National NAPVI, the National Association of Parents of Children with Visual Impairments, the state chapters that operate within each state... for some families has been that connection that they so very much needed to... deal with the news and the information. Lewerenz: That's a great organization. I've known about... about them, and the lady who founded them, years ago, who had a visually impaired student herself-- a child herself, and... the strength of that-- the state chapters, varies quite a bit from state to state. Bachofer: It does. Yes. Lewerenz: But that's a great organization. And there are other organizations, too, of non-profit organizations that link people together, and do good work. So, I always encourage them to reach out to those- those organizations. Yeah. Bachofer: Give those a try. The emotional toll of a progressive vision loss on both the child and the family, it's unpredictable and very personal. We kept hearing that from the families yesterday. What advice or resources come to mind... when you know that emotional toll is... just having such an impact, I think, on the child, as well as the family? Lewerenz: Right. It is a big toll. And it's-- it is-- it can be a very challenging things for families to deal with. I think it begins within the family, and hopefully the child will get the support that they need, or some of the support that they need from their family. I would also certainly recommend reaching out to the school counselors, and... and to other vision resource people in their area. Their teacher of students with vision impairment, and others that are in that community, and reach out to them. I think they're are always good resources. And there's a wide range of the amount of family support that students get, and... we've seen that a lot in the students that we've worked with. And sometimes resource-- other resources outside the family are limited, but we certainly try to connect them with places where they can get some assistance with that. Bachofer: And I think getting into that network of vision professionals... can take a lot of quest-- searching and asking questions, but just keeping on that. How do you respond to a parent when they look at you and ask that question? How do I tell my child that they're going to continue to lose vision? Lewerenz: I... think the parent can begin that- that conversation by- by talking about how they have a condition where change may occur. And that... and that it might... it might occur on a relatively slow basis. but it can also... take rapid changes, and that preparations need to be made. And I think you also have to-- I think it's-- someone, the parent and others who are they're talking with a student-- I think that's so important why that student needs to have a strong role model of someone who has a similar or the same condition. So that they have evidence that even though vision loss may... may continue, and their visual capabilities may decline over time, that they should have a role model of someone that they can look up to, and see that that didn't stop that person from living a full life. And I think if they have those examples in their lives, it can make a huge difference. And vision loss, of course, is a- is a frightening, terrifying thing for a lot of people. I think national polls have shown that... it's, you know, secondary to death, itself. It's the thing that people fear the most, and some people fear it more than death itself. So, it's a very frightening thing, but if you can see the example of some people who have lost vision and continue to be very successful in their life, and done great things; then I think that- that gives-- that- that says a whole lot more to that student than anything they could- they could read or hear from someone else. Just seeing that example, I think, is very, very powerful. Bachofer: Mm-hmm. One of the parents asked a question yesterday that I thought was-- just that example of-- there are so many decisions that parents have to make along the way. And that was-- when do you decide that enough surgery is enough? Lewerenz: I remember that question. And... I can understand that... the student and the family gets tired of putting their lives on hold for medical therapy, which can lay them up for long periods of time. I... would hope that they would never say, that if there's a procedure that would help my child, that- that I would encourage my child to decline it and to... to not be... not be receptive to ways in which their vision could be, if not improved, at least stabilized. So, I would... I would hope that they wouldn't reach that threshold. That they would just want to give up. On the other hand, I remember the question that was asked, and it was- it was about kind of an elective surgery that really wouldn't have much impact on... the student's functioning. And so, I can certainly understand, and would even support, avoiding surgeries that were-- could be considered... unnecessary, or elective, and concentrate on the ones that actually have the potential to preserve vision in some way. Bachofer: Throughout the conference we were hearing about the research and the technology that just keeps coming in the headlines and what is... the medical technology or research that is most exciting to you? Lewerenz: Okay. As you know, and as we heard yesterday, there's... a lot out there. The two realms that have gotten the most attention are gene therapy and stem cell therapy. I think that... stem cell therapy might offer the greatest... opportunity for not just stabilizing vision, but returning vision to a little bit more normal... level. I think gene therapy has a lot to offer, as well, and... but I think that its... its focus is more on stabilizing the condition, and not necessarily returning things to normal. And as we heard yesterday, there are a lot of new things on the horizon. Things like CRISPR, and so forth, that we still don't know enough, yet, to see just how much promise it has, but it seems to show a lot of promise. I do think-- and I hope I'm proven wrong about this, but I... personally don't hold out a whole lot of hope for some of the retinal prosthesis kinds of things. So, I'm going kind of in the opposite direction now. What do I have the most hope about, and what do I have the least hope about. But when you think about the Argus II implant, for example, that was talked about yesterday. It only has like 60 pixels, or 60 electrodes that stimulate the retina. You know, the phone in my pocket has eight million, and there are other implants that have 1,500 or more, and... that's part of the problem. But an even bigger problem, in my opinion, is there will come arrays that have far more electrodes in them, far more pixels. They already have one in Germany like I said with 1,500. There will become more. But the problem is- is that the eye doesn't work like a- like a digital camera. Bachofer: Mm-hmm. Lewerenz: The... retina is an incredibly complicated structure, and there's- there's a fair amount of visual processing that occurs just between the rods and the cones and the ganglion cells that the Argus II stimulates. Bachofer: Okay. Lewerenz: And there are "on" systems and "off" systems, and all kinds of interactions between the cells that work very, very differently than a digital camera. And so, until they figure out-- right now the Argus II provides only extremely rudimentary vision. Bachofer: Right. Lewerenz: Light and dark. Very, very large shapes, very close by. No detail whatsoever. And I think it's going to be a long, long time before the implants are able to provide any... detailed kind of vision. And I think, we're going to make a lot more progress in areas like stem cells and gene therapy, before that happens. Bachofer: Thank you very much for your thoughts on-- Lewerenz: Pleasure to be here. Thank you for the invitation. Fade to black.