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"I Have Macular Degeneration...Now What?"

This telephone discussion features Michael B. Gorin, MD, PhD, an ophthalmologist from UCLA, and Marion Reh Gurfein, a patient advocate who offers firsthand tips and strategies for living with macular degeneration.

 

 

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Date: February 26, 2014

Duration: 51:43

Speakers:

Marion Rey Gurfein Michael Gorin, MD, PhD - Photo courtesy of UCLA Health Science

 

 

BrightFocus Foundation
I Have Macular Degeneration … Now What?
Transcript of Teleconference
February 26, 2014
1:00 – 1:45 p.m.

GUY EAKIN: Hello everyone, and welcome to the first in the series of Bright Focus chats presented by the Bright Focus Foundation. So my name is Guy Eakin; I’m a Ph.D. and the Vice President of Scientific Affairs at BrightFocus. Today’s discussion is going to be titled “I Have Macular Degeneration … Now What”

We’re going to cover the basics of the disease, including risk factors, treatments that are available, and living with the disease. We’ll also have the opportunity to hear from both a clinician and a patient who are joining me on the call.

We’ll have a question and answers period during the latter part of the call. So if you’d like to submit a question—and this part’s very important—if you’d like to submit a question please press *3 at any time during the call.

For those following online, you can follow the conversation on twitter using the hashtag #BrightChats.

So I’d like to introduce first Michael Gorin, who’s a M.D.-Ph.D. and professor of ophthalmology and human genetics at the University of California, Los Angeles. He is a member of the BrightFocus scientific review committee on macular degeneration, and Dr. Gorin, in addition to his clinical duties, is a leading researcher working really at the forefront of understanding specifically the genetics of macular degeneration. So thank you, Dr. Gorin, for joining us. I’d like to give you maybe about 10 minutes or so to talk about what it is that you say to your patients that you have in your clinic about macular degeneration.

MICHAEL GORIN: First of all, I’d like to thank you for this opportunity. I think it’s really wonderful to have this chance to speak with people unfortunately whom I can’t see, but at the same time, I can reach out and try to answer some of their questions about this condition.

I’ve been studying macular degeneration now for over 30 years. And when we started, there was a lot of question as to what caused the condition, and there’s still questions that remain. But the study of genetics of macular degeneration have been very illuminating and really paving the way for some hopefully new treatments that are being tested now and will be developed in the future.

So macular degeneration is sort of a very general term. The term “macular” refers to a particular area in the back of the eye. It’s the central portion of the retina and the tissues underneath the retina that are critical for your central vision. Many people refer to the retina as sort of like a film in a camera in which the image is focused on the retina and then transmitted to the brain, but it’s actually more complicated because the very central portion of the retina has very high resolution imaging while the surrounding areas have … are much more blurred. And so when a person loses their very central vision, it’s not just having a gray spot in the vision. They also are unable to build a sharply focused image of the world, and they are left with the picture of the world that they’re able to construct from the areas of vision that they still have remaining. And most patients with macular degeneration are not blind, but with the loss of central vision, it can obviously make it difficult to accomplish a lot of regular daily tasks.

In terms of why it’s called age-related, it does occur primarily as people get older. In the younger population, we don’t see it very much, but the incidence starts to rise as you get above the age of 60 and 65, such that when people are in the older age groups such as 75 and older, a significant percentage of people have some evidence of macular degeneration, and it’s estimated that about three-quarters of a million Americans have visual acuities of twenty-two hundred or worse in one or both eyes as a result of macular degeneration.

Most of those people have what’s called the “wet” form of macular degeneration or exudative form of macular degeneration. Let me just explain briefly that what happens is that one has a … It’s not a simple process, but there’s a process by which the cells in the back of the eye become unable to function properly and you get an accumulation of material under the retina that are often referred to as drusen, which are lipid and protein deposits which we now know are linked to the body’s inflammatory pathways. But over time, there are several ways that the condition can progress so people can have a situation where the cells simply die from being exposed to these inflammatory factors. And you get spots of vision that are lost, and that’s known as the atrophic form of macular degeneration.

For another group of people—and it’s a smaller number—but they experience a much greater percentage of vision loss, what  happens is that the damage to the tissue results in the growth of a blood vessel from underneath the retina from another blood supply that feeds the back of the eyes, which is like a swamp meshwork of blood vessels. And this new blood vessel that grows under the retina leaks and bleeds, and it leads to fluid in and under the retina, causing the vision to drop and causes scarring to form.

So for the wet macular degeneration, many people are aware that we have injections now that can slow the progression and leakage of those vessels and often preserve a great deal of sight. And it’s been a real life-changer. I’m very fortunate to have practiced before and after the advent of these drugs to see how much they’ve really changed the quality of life of our patients.

It’s still key that you get treated promptly once you develop the wet form of macular degeneration because the sooner we can prevent scarring from developing and damage to the cells, the more likely we are to be able to preserve vision. It’s not a cure because treating the blood vessels and inhibiting them from growing doesn’t stop the underlying condition that caused them to develop in the first place. But people are working on that as well, but we don’t have a good treatment at this time nor do we have a really good treatment for the people who go on to the atrophic form that I mentioned, where the cells just die. But for the wet form of macular degeneration, we’ve made a lot of progress.

There’s a lot that we need to talk about because it’s more than just simply treating the eye with injections. Obviously, this condition has a lot of impact on people’s lives, and we’ll hear from Marion in just a minute and her experience. But it’s very important to realize that it has multiple facets. We have to make adaptations in how we live and use tools to allow us to continue to function with our lives with perhaps compromised vision. But we also have to be sensitive to those who have this condition, who very often are at a higher risk for developing depression and becoming isolated from the rest of society because of their loss of vision and their … its impact on their mobility. So with that, I’ll turn it back to you and let you have the opportunity to have a … speak with one of our people who has this condition.

GUY EAKIN: Well thanks, Dr. Gorin. I guess one of the questions that I’d have is you’ve mentioned that there are new drugs out there that are very popular and commonly used. I know that there are a lot of people that may be receiving therapies that might predate those drugs. So how would someone know if they are getting the right drugs? Could you sort of share what the most common drugs that are being used these days?

MICHAEL GORIN: OK, well first of all, for almost all patients with macular degeneration, we are pretty universally recommending that they take the vitamin and nutrient supplements that were identified from the National Eye Institute’s age-related eye disease study. It’s not a dramatic treatment, but it does show good evidence in two studies of slowing progression, and that works for both form of macular degeneration that I’ve mentioned.

In terms of the drugs and treatments, we pretty much are focused on three drugs at the moment to slow the growth and the leakage of the blood vessels in the back of the eye. I’m going to give you the brand names because for most people, it’s easier to pronounce, quite frankly, and most people hear those names more commonly.

The first is Lucentis, which was the first FDA-approved drug for the treatment of wet macular degeneration. It is a engineered antibody, essentially, or fragment of an antibody that binds to a particular molecule called vascular endothelial growth factor. VEGF is what we frequently say. And by binding to that molecule, it takes that molecule away from activating the growth and leakage of blood vessels. And there are many forms of that molecule but VEGF is very … Lucentis is fairly specific and very, very effective.

When we were waiting for Lucentis to become available, a colleague of ours, Dr. Rosenfeld in Florida, recognized that Avastin, which was another drug made by the same company for the treatment of cancer, was really very similar in structure and what it did. And so he tested that drug out and showed that it was really very similar in its ability to block the growth of blood vessels. Because the cost is so much less—and that’s because the dose is divided up for the amount you need for the eye—many people have used Avastin in place of Lucentis. There was a great deal of controversy about this, and finally, the National Eye Institute did conduct a major study. And now there have been six such studies comparing Avastin and Lucentis, and essentially, there’s been no evidence of a difference in efficacy of either drug with respect to each other. And there’s some controversy as to whether one may have more adverse side effects than the other, but actually, even that’s not very clear-cut.

The third drug is Eylea, which is a newer drug, and it has slightly different structure which also binds the same molecule. It tends to bind more tightly and bind more forms, and thus for some people, they’re able to get by with injections a little bit less frequently, or they can have a response to that drug if they’re not responding well to Avastin or Lucentis.

So those are the three basic drugs we have. Older drugs such as Macugen and Visudyne, which was done with a combination of a cold laser, are occasionally still used—the Visudyne occasionally but not on a routine basis. There is a new drug called Fovista, which is being tested out now to be used in conjunction with either Lucentis or Avastin or Eylea, which attacks a different molecule, which may provide additional effectiveness for some patients. But that’s not available at this time.

GUY EAKIN: Well, thank you so much. I know that that’s very helpful for people, and maybe we’ll have an opportunity to talk about some of the other … some of those treatments or others. I know you and I had a brief discussion about telescopic eye implants earlier on, and maybe we’ll have some questions about risk factors later in the day, but for the moment, I want to remind people that if you have a question, please push *3 at any time during the call, and that’ll take you out of the call and to someone who can take down your question for you. And then we’ll try to get that question into our question-and-answer session.

But I’d like to introduce you now to Marion Reh Gurfein from New York. She is a former watercolor artist and poet, and she was diagnosed with advanced macular degeneration in her early 80s. So she is now 93 years young, turning 94 next month, having lived with macular degeneration for over a decade now. And she has found ways to continue her art, and she’s using her visual aids and other technology to enable her to live as full and as active a life as is possible. So Marion, thank you so much for joining us. I was wondering if you could tell us how you evolved as an artist and how you adapted to macular degeneration.

MARION GURFEIN: I had been an artist for most of my life, very active and constantly with a paintbrush or a piece or artwork in my hand. And it was extremely difficult for me when I seemed to wake up one morning and the whole world was slanting. And of course, I ran immediately to my doctor, and he told me that I had to see a specialist and told me that I had macular degeneration, which was a terrible, terrible blow. But I decided that I was just going to make the best of it the way I made it most of my life, making the best of everything.

And so now that I’m in my 90s, and I’ve had it for so long I have taken to making out collages. I use colored paper and scissors and glue and anything else that I think would be appropriate to glue down onto a design, and I have been making them and giving them out to people, and they seem to love them. And I feel as though I can make people happy again, so I give them away, and they seemed to have been much appreciated, and it makes me happy. It’s important to know that you can still do activities and at the same time help other people.

GUY EAKIN: That’s such a wonderful thought, and it seems that you’ve stayed very active and in the face of really a terrible disease have managed to stay doing the things that gave you pleasure and gave other people pleasure. You’re talking about a very positive focus on what you do. I’m curious, you know, what are the things that you’ve run into, like how do you approach that problem? How do you wake up and say, “Well, I want to find if I can still handle this?” What would you tell people who are having problems doing the things that they love doing? And how would you tell them to work on those problems?

MARION GURFEIN: I would tell them to look into every single thing that they can explore doing. They can go to a low-vision doctor, and he could help her or him pick out different things. For instance, I have a video eye. With that I can put some of my letters and different things that I have under this video eye, and it, you know, blows it up into the sort of things that I can see. So I would suggest that they see a doctor to see if everything that they’re doing is the proper thing. Are they looking for the proper drugs? I, unfortunately, had this so late in life that the drugs did not affect me at all. But I would advise other people to try to find all those new drugs that I heard described before.

GUY EAKIN: Well, I think when I talked to you the other day, one of the things I heard from you is that you have a lot of strategies around your house. You mentioned this device that you have, your video eye that you use for blowing up written words and journals. You also told me that you use colored stickers and dots that you put on things like your hot and cold water or different switches that you need in the house. How do you feel that works for you?

MARION GURFEIN: Wonderfully. I don’t know how I’d get along without them. It makes me use everything properly. You can put the little red dots on the hot water, on the cold water, and everything in your kitchen. On my stove, I have red dots and I have black dots. And it’s helped me so much because I can get around … I can even cook and live alone and do all these things with these aids.

GUY EAKIN: Well, thank you so much. I think what we’re going to try to do is … I think what we’re going to look at all the questions that are coming up. I’m realizing that there’s just a number of questions that we might be able to address to both you and Dr. Gorin. So maybe we’ll move on to the question-and-answer period right now. And I think the first question that coming in is going to be a question from Carol in Ohio, who’s talking about stem cells and can she be placed in a database. And I think … Let’s send that question to Dr. Gorin, and I think within that, we could ask, “Are there … What do we know about stem cell treatments for macular degeneration right now?” And are there any databases? How would someone sign up for those types of trials?

MICHAEL GORIN: I don’t think that there’s any database right now on a national basis for people to sign up for stem cell work. Certainly, there are people who are sending inquiries to the small group of investigators who are starting to do some work with stem cell transplants for the atrophic form of macular degeneration. There’s no one currently doing stem cell transplants for people who had scarring and vision loss from the wet form of macular degeneration. We’re really at the early days of this.

The implantation of stem cells is a sort of complex process. There’s no question that scientists have gotten very successful at being able to isolate cells from blood or from skin or from embryos, but you can actually do it from an individual and make those cells start to act as if they have the ability to form different types of cells again that they wouldn’t normally do and then to get them to form cells that are very similar to the cells that take care of the back of the retina.

The problem is that when you have vision loss from macular degeneration, you’re not just losing a single cell type, you’re losing multiple cells … cell types in the back of the eye, and the remaining cells—the ones that survive—rewire in order to survive. And so when you implant stem cells back in the eye, they not only have to go to the right position and assume the correct function for the cell that needs to be there, they have to also rewire to the cells that are already still existing in your eye that need to connect back to the brain. And that means that those cells that have rewired themselves have to disconnect from what they were doing and now form new connections again. It’s a very complex process.

I often describe it to people: it’s a lot like doing major remodeling in a home. We, right now, we’re at the stage where we can put those cells in to the back of the eye, and they can sort of layer out a bit. It’s a little bit like painting an old wall, putting them on the surface and having them form a coating. But if you’ve got problems with the plumbing and the electrical, you have to literally get inside of those walls and pull out the old stuff and remove what’s damaged and what’s not working right and then reconnect things to the existing plumbing and electrical with your new materials that you’ve engineered in. So we’re at a very early stage.

I think right now, the initial studies are basically to look at safety, that they can do the surgeries and not cause harm, that patients do not have bad reaction. But I don’t think that we’re at the stage where we can say to patients that there’s a high success rate in terms of major restoration of vision. And I know that people are interested in stem cells because they’re not just interested in having the conditions stop, they actually want to reverse the loss of vision that they’ve already experienced. But that really is a challenge that we’re not … It’s not really at the point where we’re ready to offer that to people in a consistent way.

 GUY EAKIN: Well, on the subject of the databases, whereas there’s not necessarily one database that one can register for, there is—and we direct people to this all the time—clinicaltrials.gov is a website that one can go to to find listings of all the clinical trials that are going on in your neighborhood for any disease. And you can put in macular degeneration and you can put in your zip code, and it’ll tell you what’s going on within a certain number of miles from your house. And if you don’t use the computer, I’d invite you to call the BrightFocus Foundation at 1-800-437-2423, and we have staff who will help you work your way through that website.

MICHAEL GORIN: Yeah, I think that’s a useful … an incredibly useful resource, but people need to understand that there’s no place on that website where you can sign up for a study that doesn’t exist yet.

GUY EAKIN: Sure

MICHAEL GORIN: But certainly, one needs to keep your eye out and keep looking as new things are coming up all the time. Also, be sure that you enter into an appropriate dialog with someone who can tell you whether this is a good choice for you. Sometimes, stem cells might be an excellent opportunity to try and restore vision for you depending on the nature of your macular degeneration, and in other cases, because there’s been so much damage over time from bleeding or scarring, that that’s not really going to be a realistic option, at least in the foreseeable future. So certainly as new things emerge, you should engage your doctor in a dialogue in terms of what’s appropriate for you.

GUY EAKIN: OK, well let’s move on to the next question. We have a caller named Gay who’s asking about blocking blue light and how important it is and what your opinion might be about filters on computers and TV screens? But maybe there’s a larger question there about what are the risk factors for macular degeneration. You have a comment on that, Dr. Gorin?

MICHAEL GORIN: Well, the major risk factors that we have found are variations in the DNA or the genetic information in your cells, and it’s not just one gene that does it or a variation in one gene. It’s actually a combination at which makes it a fairly complex genetic condition. That’s why you don’t … you often don’t have much of a family history with people who have macular degeneration: about 20 percent of people who will report having another family member with the condition. But our studies so far have indicated that whether you have people in your family with macular degeneration or you’re the only one, the genetic risk factors seem to be the biggest component of it.

Now in terms of nongenetic factors, there’s lots of associations that have been looked at. Probably the strongest is smoking. So there’s good evidence from multiple studies that smoking increases the risk of macular degeneration two and a half [2.5]-fold.2.5-. Now, whether that is smoking sometime in the distant past or people who are still smoking, that’s a little less clear, but the data is pretty strong overall that smoking exposure for an extended period increases risk.

There have been associations with different diets, but what they’ve done is they’ve looked at populations of people who have macular degeneration and people who do not and have found evidence that higher intake of the vitamin regimen seems to lower the risk. Higher intake of high-glycemic foods like simple sugars, fructose, seems to raise the risk. But whether these are causative or just associated with how people live … There’s now some later new evidence that the Mediterranean diet may be helpful in lowering one’s risk. These are things that people are investigating on a population basis since it’s so difficult to do a clinical trial.

But in terms of the blue light issue, actually, studies have had a really hard time showing that light exposure—whether its sunlight or blue light—actually increases the risk of macular degeneration. The evidence for concern of blue light has really come from animal studies, where they’ve shown that when animals accumulate a certain deposit of a vitamin A derivative in the back of their eye, that blue light can activate that molecule to then trigger that inflammatory pathway that I’ve alluded to. That may accelerate the macular degenerative process. And so based on these studies, primarily in mice, we have some reason to believe that blue light may be problematic, but we’ve not seen it in human populations very effectively. So a lot of doctors are recommending that patients use blue blocking sunglasses just to reduce their blue light exposure, but the evidence is not all that solid. It’s certainly not an uncomfortable or unreasonable thing to do.

GUY EAKIN: Well, thank you so much for answering that, and it’s certainly smoking that rises to the top of the list on the information that we put out through the BrightFocus Foundation. As you mentioned, some pretty difficult words in there, and so we are going to produce a transcript from this call, and it will be shared through our website, and if we have your email address as we do for many of the callers, we will actually email that out to you.

We’re also going to be trying to get answers for the questions that we don’t have time to address on this call. So if you give us just a couple of weeks, we’ll send out via email the answers to those questions and also put them on our website. If you don’t use email, feel free to call in. Give us a couple weeks, but call into the BrightFocus Foundation at 1-800-437-2423, and we’ll send you an answer to those questions that we might miss on the call.
So I have a question here that might go to Marion. So there’s a question about how well do radio and talking books or audio books work for you. Do you use those? Do you find them helpful to stay in touch with the world around you?

MARION GURFEIN: The audio books are wonderful. Without them, I don’t know how I would live. I continuously read, listening to talking books. They come in … Sometimes, I have them piled up twelve at a time, almost 20 of them. And I am listening to them and listening to them, and it’s the most wonderful thing that was ever invented. That’s how I feel about talking books.

GUY EAKIN: Well gosh, that sounds like a pretty ringing endorsement, so I hope that answers the question that came in for Marion. We have a lot of questions coming in about dry macular degeneration, and so many of the questions are about the vitamins that are prescribed and how are they working. Is there anything else coming down the pipes in terms of research for dry macular degeneration. Dr. Gorin?

MICHAEL GORIN: Well, maybe it’s best if you rephrase the question to me again so that I make sure I can …

GUY EAKIN: Sure. Well, we have a lot of questions about dry macular degeneration, and some of them are referring to the AREDS formula and asking the question how do these … how does this vitamin supplementation work? Is it right for people to be taking it? And then the question of if AREDs isn’t enough—you know if these vitamins aren’t enough—what does research have, you know, in the next 5, 10, 15 years for us? Are we going to be seeing new therapies for dry macular degeneration?

MICHAEL GORIN: Well I think you … OK, so there’s two parts to that. So with the age-related eye disease supplements (the AREDS supplements), those formulations were first suggested from some epidemiologic studies, and then the National Eye Institute did actually two major studies looking at how these supplements could slow the progression of macular degeneration.

What many people don’t realize is that the effectiveness of those supplements was with people who already had macular degeneration. In other words, if you’re thinking that the supplements are preventative for macular degeneration, if you’re thinking that your children should be taking it perhaps because you have macular degeneration, the evidence is not as strong, in part because the study was able to show a difference between people who already had macular degeneration who took the supplements and that they progressed less quickly than those who did not take those supplements. I should also point out that the people in those studies, most of them were taking multivitamins like a standard vitamin supplement in addition to the Ocuvite®. So that was not the only vitamin supplement that they took.

The improvement was relatively modest, but it was definitely shown to be effective in both studies. It isn’t the complete answer, and people still can progress with a supplement. It’s not the only thing. They are working … So for people who already have macular degeneration, we’re recommending those supplements for pretty much almost all of them unless … though we have some caveats. And one is that we’ve now taken out the beta carotene or vitamin A from the formulation because, as we just talked about, smoking’s a risk factor, and studies have shown that smoking increases the risk of lung cancer. There are some concerns about vitamin E and prostate disease in males, so there are some cautionary aspects to it for some people.

In terms of other treatments that … which is the exciting part, there’s a lot going on right now. A number of companies are developing drugs specifically looking at—because of the genetics that has been done—at ways of modifying the inflammatory, the regulation of the inflammatory pathway that would again either prevent the development of macular degeneration or slow it. And those drugs are now just starting to go into early clinical trials, but they’re not available yet. There’s none that have been released yet; however, some early evidence shows that you can slow the progression of the atrophic form of macular degeneration with some medications, but these are preliminary results at this time.

GUY EAKIN: Sure, so we have some more questions. You alluded to the genetics of AMD and some of the potential therapies around that. We have a question from Hazel in Nevada, who says that she’s been reading research updates on the BrightFocus website, and they’ve answered many of the questions—thank you, Hazel—but given her family’s multigenerational incidence of dry AMD, she’d ask how close are we to a gene therapy? She realizes that there are multiple genes associated with increased risk and multiple therapies must be explored, but she’s wondering what the chances are it will happen in her sons’ lifetime, and her sons are in their late 20s.

MICHAEL GORIN: Well, first of all, when we see clear-cut family histories like Hazel’s describing, it’s important—particularly if people are being affected at a younger age—to look for other genetic causes than age-related macular degeneration because there are hereditary forms of macular dystrophies that look very similar to macular degeneration, age-related macular degeneration, that are caused by a variants in a single gene. And we don’t have therapy for them, but there’s a lot of research going on in those specific conditions. So it’s useful to know if she is in one of those categories.

Putting that aside, there probably isn’t going to be a single gene therapy for macular degeneration in the sense that we know that it’s a combination of variations in genes. However, there may be strategies for gently adjusting the regulation of the inflammatory pathways or the lipid pathways or the other cellular processes that are involved in macular degeneration that may allow us to take someone who’s at relatively high risk because of their genetics and essentially reduce that risk substantially. Specifically modifying genes may not be the best way to go, actually, for many patients who have this condition or may develop it in the future.

GUY EAKIN: Thank you … I seem to have a question here from Richard in Maryland, who may be thinking like a scientist, so you tell me. He’s asking about the drusen in the fatty waste that accumulate in the macula as waste products. And he’s asking if it’s possible that the body has always had a problem and that when the person reaches ages 55 and older, the waste management system reaches a tipping point and finally breaks down. Is that possible? What do we know about aging as just a process of aging related to macular degeneration?

MICHAEL GORIN: Well, you know we’ve … For a long time, we thought about those deposits known as drusen as sort of garbage that was accumulating and not being properly processed by the cells under the retina. That model has really been changing in the last few years as we’ve started to realize that the deposits the proteins and lipids there are not just shed material that’s not being digested, but actually represent a complex of proteins and lipids—again related to this inflammatory process—and in fact, is very similar to what you see in people’s blood vessels or sometimes the plaques that you see in people’s brain. We see many of the same proteins such as amyloid and presenilin. We see the complement factors. We see various apolipoproteins from the cerumen. So it’s not a simple matter of the garbage isn’t being taken out, but that something else is going on.

Now there are some people who feel that this is an inevitable process of aging, that the body just simply cannot maintain a perfect balance of regulating these inflammation pathways that protect us, by the way, from infection but can also end up attacking our cells. But that being said, there is the thought that we can perhaps adjust it slightly, particularly with respect to the area of the ear and the tissues of the eye, that we may be able to then prevent it from developing in the future.

GUY EAKIN: So there’s questions coming in that are about aging, but we also have a question here from Kathy, who’s saying that her daughter has Stargardt’s disease, and she is 23 years old. Stargardt is a type of macular degeneration, but it’s sometimes similar and sometimes different in some ways from the type of macular degeneration we’re talking about. What can you tell us about the relationship between AMD and Stargardt’s? And maybe for Kathy, is there any new hope for this disease? Is there any development coming down the pipe for Stargardt’s disease?

MICHAEL GORIN: There’s a lot going on in Stargardt’s disease, and a lot of our understanding of age-related macular degeneration has actually come from the research done of Stargardt’s disease both in humans and in animal models.

Stargardt’s disease is generally caused by alterations in a very specific gene, though we actually know several genes can give rise to it in some families. But the most common one is called ABCA4. For many years, we speculated whether or not there were patients with age-related macular degeneration who had abnormalities in the same gene. And the truth is the majority of age-related macular degeneration patients do not have abnormalities in that Stargardt’s gene, though there are a few who probably are there. But what we have begun to understand is that the processes by which the cells are damaged and by which they ultimately can die are very similar between the two conditions. And there’s a lot of interesting research—some of it going on at UCLA by my colleagues in the basic research laboratories—looking at the factors that increase the risk of age-related macular degeneration and how that affects how cells die in patients who have Stargardt’s disease.

So in a sense, the mutation in the ABCA4 gene is necessary and sufficient to cause Stargardt’s disease to emerge in a person, but how they’re going to progress and how those cells die may be very similar. And so it is possible that therapies that are developed for Stargardt’s may be advantageous for people with age-related macular degeneration and vice versa. But there’s a lot of things going on for Stargardt’s disease and a lot of hope for those patients. And it’s important that we do research in that area because these people are affected at such a younger age so that they have to live with the consequences of vision loss for such a greater percentage of their lifetime, that even though it’s a fairly rare condition, it is extremely important that we address that condition.

GUY EAKIN: So I have a … I have Jean, who’s out there in wine country in Washington. She’s asking about some success in treating macular degeneration with Resveratrol, which is a compound found in red wines. Are you familiar with that literature? Is there any hope that maybe a glass of red wine might help prevent macular degeneration?

MICHAEL GORIN: There’s a lot of thought that oxidative stress plays a role in what causes cell death and for vision to be lost in macular degeneration. And so a lot of the interest and work going on is looking molecules that can reduce oxidative stress to cells. That includes compounds that are antioxidants. And some of the vitamins that we’ve mentioned that are included in the age-related eye disease supplements, the AREDS supplements, are antioxidant-type molecules. They reduce oxidative stress. Resveratrol and there’s other ones as well that have antioxidant properties some people believe may be helpful.

In terms of actually clinical studies that have confirmed this in people, the data is actually pretty lacking. It’s hard to really conduct those studies and control people’s exposures. But certainly, there’s some scientific basis for thinking that antioxidants may be beneficial. The established evidence is poor, and I think it’s important that people keep in mind that moderation is always a good idea because obviously, even things that have some benefits in large doses probably can cause the derangements in cells and other things as well. But it’s understandable that she’s exploring that approach, and certainly, we have no evidence that suggests that it’s harmful at this time at least on a per-day basis.

GUY EAKIN: Thank you so much. We have another sort of a question that’s not on the most frequently asked treatments list, but we have two questions, one of which is from Cindy, and she is saying that her doctor is recommending that for AMD she receive a vitamin B9 injection, and is this … will this also help people who suffer from AMD? Is there any reason to believe that that B9 injection should either be done or should not be done because of the macular degeneration?

MICHAEL GORIN: I don’t know of any association of vitamin B9 with macular degeneration. There has been some evidence in vitamin D deficiency may be an issue. But for B9, I’m not aware of anything specific. There may be some other reason why he feels that she has a deficiency that needs to be addressed, but I don’t know of evidence for that.

GUY EAKIN: Well, I think we’re going to have to come pretty soon to the end of our question-and-answer period, and maybe, we’ll take one more here. We have one from William in North Carolina, and he’s wondering about preventing progression of macular degeneration. And maybe within that, I think we’ve talked about that a little bit in the dry form of macular degeneration, but maybe if William doesn’t mind too much, maybe we can also talk a little bit about are there any things that can be done just to prevent macular degeneration. And if you do have it, how rapidly … We talked about it progressing, but how rapidly do the different stages progress?

MICHAEL GORIN: In terms of progression, it’s very tough because for the patient, it’s a very different experience than what the doctor sees. And it gets back to what we’ve talked about before about the regions of the retina not being equal in their importance in your vision. So in the atrophic form of macular degeneration, some people develop loss of cell right in the center of the vision, and they lose the vision fairly quickly. Other people, for example, will have loss of areas of vision outside of the center and in the sense almost like a ring-like pattern of vision loss with the center, the very center, still being preserved. Those people will often report back saying, “I can read 20-20 on the chart, but I don’t see all the letters in a word, and I’m really struggling with my vision.” So those people have the atrophic form, and it’s affecting them in a very different way. For them, progression of even a loss of a small amount of that central remaining area has a huge impact even though it may look, when we examine the eye, to be a very small area that’s actually changed.

With the case of the wet macular degeneration, vision changes can occur extremely quickly. If the person has leakage and bleeding, the vision can literally change in days and drop fairly quickly. And if there’s bleeding, the vision can drop within minutes and hours. On the other hand, again with these injections that we’re using, we’ve had patients with macular degeneration whom I’ve treated for 4 and 5 years of injections who’ve been able to maintain good vision in that eye. So we’re able to do a great deal.

In terms of slowing progression, there’s not a lot. I mean, you take the AREDS supplements, as we’ve talked about, and it’s modest … The benefit is a modest one, but it’s a reasonable one to do.

Staying healthy and making sure that you are exercising and consuming a good diet and living well is important, but I would actually like to echo what Marion said, which is attitude makes a huge difference. People who constantly are searching for that cure rather than figuring out how they’re going to live their lives really deprive themselves of a lot of enjoyment in their older years. And Marion has really given a lot of people a valuable message today about how to really cope with this disease, which is, you know: find solutions to the things you need to do. Do what you can. Try to maintain a positive attitude. Try to stay connected to the rest of the world. Stay informed, stay engaged with others. And make the most of what you can with the vision that you do have. Certainly, be good about following up with the treatments that are offered to you by your doctor, but don’t neglect the fact that if you’re depressed or if you need help or if you need visual rehabilitation services, be sure to get them.

GUY EAKIN: Well, thank you so much, and what a wonderful note to end things on. I want to thank Dr. Gorin and Marion for taking time to speak with us today. And thank you to everyone who joined the BrightFocus Foundation call and asked us questions.

Our next chat will be on what’s new in macular degeneration research, and that will be Wednesday, March 26, at 1:00 p.m. To register or request free resources on macular degeneration like our Amsler grid, please call the BrightFocus Foundation at 1-800-437-2423. That number is 1-800-437-2423. And visit our website at brightfocus.org; that’s “org.” We’ll be posting a recording and a large-font transcript of this call on our website, so if you’d like to see what was said and take it to your doctor, that will be on our website. Just give us about … Just give us a week or two.

This is the first of our chat series, and we want to hear what you think. So for those who are still on the line, we actually have an opportunity to do a survey which can use your telephone keypad. And what we’d like to do is we’d like to ask you, very simply, how would you rate this telephone chat series because we plan on doing it … We hope that it’s helpful, and we want to make it better, make sure it serves the needs of people who are listening in.

So if you have your phone near you, we’re asking the question, “How would you rate this telephone call?” Please press “1” if it’s very helpful; “2,” somewhat helpful; and “3,” just not helpful at all. So let’s try to do that again. It would be “1” for very helpful, “2” for somewhat helpful, and “3” for not very helpful.

So we’ll take a second while people are pressing those keys. And again, I’d like to really thank Dr. Gorin and Marion for everything that they’ve told us today. We talked about risk factors. We talked about possible treatments. We covered the epidemiology of the disease. And we covered a lot of questions. We had a lot of questions, a multitude of questions we received. And we can’t answer them all today, but over the next week, we’ll be putting a recording of the call on a transcript on our website, and we’ll have information on the answers to some of the more frequently asked questions at Brightfocus.org.

We’re very pleased to see that most of you found it very helpful. We do have another question about what would be more helpful, what topic would be of interest to you for future telephone chats. So we’re going to use the same number pad on your phone. So we asked, “What would you like to hear about?” If you would like to hear about treatments, press “1”; for research, press “2”; and press “3” for living with low vision. And so what are the daily things that you can do to live with low vision in your own home? So again that’s “1” for treatment, “2” for research, and “3” for living with low vision.

We’re planning this chat series as a monthly opportunity for people with macular degeneration to phone in and participate as part of a community of people with macular degeneration who are going to be using this service, we hope, as an opportunity to stay in touch and in tune with what’s going on in the scientific world, as well as what’s going on with the people who have this disease and how they find ways to live their life, as Marion and Dr. Gorin mentioned, in a very positive way, all the while taking advantage of their remaining vision.

So we have survey results coming in, and we’re going to move over to the very last question before we conclude for the day. What we’d like to know is: based on your experience today and knowing that we’re going to have different topics every month going forward, how likely is it that you would attend future chats? And so what we’re going to do is press “1” for very likely; press “2” for somewhat likely; and press “3” for, well, not very likely. So again, the question is: how likely are you to participate in a future chat? That will be “1” for very likely, “2” for somewhat likely, and “3” for not very likely.

Thank you, everyone, for your feedback. Thank you for participating on this call. And on behalf of the entire BrightFocus Foundation, we just wish you the best in your week. And any additional comments you have on the call, just stay on the line. Thanks and have a great day. Thank you very much.

 



The information provided here is a public service of BrightFocus Foundation and is not intended to constitute medical advice. Please consult your physician for personalized medical, dietary, and/or exercise advice. Any medications or supplements should only be taken under medical supervision. BrightFocus Foundation does not endorse any medical products or therapies.

Last Review: 02/26/14


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