Detecting the Early Signs of Macular Degeneration

BrightFocus Foundation
“Detecting the Early Signs of Macular Degeneration”
Transcript of Teleconference
June 25, 2014
1:00 – 2:00 p.m. EDT

GUY EAKIN: Hello, everyone, and welcome to our monthly BrightFocus Chats, presented by the BrightFocus Foundation. My name is Guy Eakin. I’m a former researcher, and I now work for the BrightFocus Foundation as their Vice President of Scientific Affairs. Today we are going to talk about detecting the early signs of macular degeneration.

What I think is interesting about this question is that it also speaks to how we monitor that disease over time. It’s not just about the people who don’t have the disease yet, it’s also about the people who are working with the disease and understanding it in their life.

If you would like to submit a question at any time during today’s call, please press *3 to submit your question to an operator. If for some reason you are disconnected from the call, here is the number to call back. It’s 877-229-8493. That’s 877-229-8493. You’ll need an ID code to punch in, and that’s 112435, 112435.

Our guest today is Dr. Jacque Duncan, an ophthalmologist at the University of California San Francisco Medical Center, and she specializes in treating retinal degenerations such as age-related macular degeneration. She is a professor of clinical ophthalmology at the University and is researching treatments to preserve vision, and devices to monitor and stimulate visual perception.

Dr. Duncan, I have to say, I’ve worked with you before as a grantee of the BrightFocus Foundation, and I enjoy being able to invite you in as a guest and as a friend! Could you take a few words and give us a few moments to talk about your specialty and the type of practice you run at the University?

DR. JACQUE DUNCAN: Sure, well it’s a real privilege to be able to speak with constituents of the BrightFocus Foundation who, as you mentioned, has been a very generous supporter of my research. I am really honored to be here today. As Guy mentioned, I am an ophthalmologist, or an eye doctor, an M.D., who is trained to take care of patients with eye problems.

My particular area of expertise is in diseases of the retina. I am very interested in age-related macular degeneration, as well as other diseases caused by genetic changes, which cause the vision cells to disappear and die over time with ultimate vision loss.

These have been sort of challenging diseases to tackle from a very basic and fundamental standpoint over many years, and I think that research funding through BrightFocus and other sources has really helped us better understand how the diseases happen in the first place and develop at their very earliest stages—which brings us to the topic of the call today—but then subsequently to go on and later down the road cause vision problems for people in a number of different ways.

I find that a very rewarding part of my job is I am not only able to see patients who are affected with these diseases but also work with very smart scientists to try and better understand how the diseases cause vision loss, with the goal of preventing vision loss and helping to restore vision to patients who develop these diseases down the road. That has been a really exciting part of my job. I see patients once a week and teach medical students about one day a week and do research the rest of the time here at UCSF.    

GUY EAKIN: Well thank you for taking time out of your really busy schedule to join us today. I have some questions that get into that idea of detecting and monitoring macular degeneration. We hear stories at the BrightFocus Foundation about people who have AMD and maybe they have another condition. We did some calculations last year that said probably 1 in 25 people over the age of 50 have macular degeneration or glaucoma, or they might have both diseases. I’m curious, how do these diseases complicate each other? If I came to you with an uncorrected cataract or glaucoma, does that make AMD harder to diagnose?

DR. JACQUE DUNCAN: Those are absolutely terrific questions. Yes to all of those questions. Age-related macular degeneration and cataracts and glaucoma, all share in common the fact that they increase in prevalence as people live longer. So, the older people get, the more likely they are to have any of those diseases and, therefore, also to have more than one of them at a time.

Certainly with cataracts, which is cloudiness of the lens, having a cataract can make it harder for a doctor to diagnose macular degeneration sometimes. Sometimes the cloudy lens not only prevents the patient from seeing as clearly as they would if the lens were clear, but also makes it harder for the doctor to look in and see the features that let us know a patient has macular degeneration.

There have been a lot of advances in diagnostic tools over the last several years that allow us to see the retina even when cataracts are present. These involve special kinds of pictures of the eye that we can take where we can identify features that let us know a patient has macular degeneration even when our view in is not perfectly clear because of the cataract or other problems.

In terms of glaucoma, glaucoma is a special disease. It’s similar to macular degeneration in that it is associated with death of neurons or brain cells that take the message from the eye to the brain. Like macular degeneration, which causes vision loss when the primary neurons that sense the light die, when glaucoma causes cells to die in the eye, similarly, vision can be lost because the message doesn’t get communicated to the brain properly. It is true that some patients have both macular degeneration and glaucoma. They cause vision loss in different ways.

Macular degeneration tends to cause central vision loss, whereas glaucoma sometimes causes vision loss off to the side that patients are not always aware of until the glaucoma has progressed to a relatively late stage of disease. One thing that these two diseases share in common is that they both affect older people. Another thing that they share in common is that they are best identified by an examination with your eye doctor. Until they have progressed to a relatively advanced stage, they may not cause symptoms that the patient is aware of.    

GUY EAKIN: That’s really interesting. From my standpoint, we certainly, in many areas of medicine, hear about the difficulty that patients have in getting a diagnosis for a complicated disease. You talked about the increases in technology, and you’ve talked about the prevalence of the disease—how many people and how common macular degeneration is. For a retinal specialist, such as yourself, when you give a diagnosis of macular degeneration, how sure as a patient can I feel that that is probably the best diagnosis? How common are the diseases that might be mistaken for macular degeneration?

DR. JACQUE DUNCAN: Those are also great questions. Age-related macular degeneration is the leading cause of irreversible blindness among people over the age of 50 in the United States. It is absolutely a disease that every ophthalmologist knows how to recognize and is trained to take care of. When a doctor identifies signs of macular degeneration in a patient’s eye, there is a very strong chance that that is the correct diagnosis because it is a very common condition and it has hallmark features that, when present, are almost always associated with macular degeneration.

The other type of diseases that might be confused for macular degeneration are far, far less common. Some of them tend to affect younger people but, if they do affect older people, might be mistaken for age-related macular degeneration. Other times, diseases that are associated with particular medications people might have been taking could be confused with age-related macular degeneration or could complicate the progression of macular degeneration. Most of the time, when it is not macular degeneration, it is a patient who is much younger and has features that look like macular degeneration. Those are very uncommon occurrences, but when that happens, that is caused by a hereditary mutation in a gene that causes disease that runs in families. That tends to be a situation where a patient who is younger than 50 has features that look kind of like macular degeneration. That’s a rarer cause of macular degeneration but tends to affect younger people.

GUY EAKIN: I have to say, I just pulled up the statistics, and if you are asking about macular degeneration, the research we’ve read says that maybe as many people as 11 million people have some signs of macular degeneration. What’s amazing to me is that when we talk about how common a disease it is, that’s about the same number of people as have cancer or have had cancer at some point in their life and is now in remission. Cancer is something that is on the tip of everyone’s tongue. We all know about macular degeneration, but maybe we have some work to do to raise awareness about that disease.

Thank you for those answers. Let’s move onto some questions from our callers. If you want to submit a question, and you didn’t get a chance to do so yet, just dial *3. What will happen is you will be taken out of the call to talk to an operator, who will take down your question, and we will add your question to the queue. We will try to answer as many questions as we can that are representative of the callers’ interests on the topic, and after the chat, you can always call BrightFocus at 1-800-437-2423 or visit our website at BrightFocus.org to have other questions answered. We cover low-vision, we cover (as we mentioned earlier) glaucoma, and we have some very skilled health educators who would be very happy to help you.

Let’s take the first question from—actually we have two questions that are similar—and we have one from a man named Norman, and one from a woman named Lynnel from Colorado. They are asking not about what the physician or the eye care provider does, but at home, how do we diagnose macular degeneration. What are those early symptoms you should be aware of that might signal macular degeneration? 

DR. JACQUE DUNCAN: Great question. So again, macular degeneration has gotten to a point in our understanding of the diseases that we are best able to treat complications that might cause vision loss when they are detected at early stages. This is a very important question such that when people might be developing the very earliest signs or symptoms of the disease, people are aware that they should go see an eye doctor.

The other point to make is that there was a study funded by the National Eye Institute about a decade ago called the Age-Related Eye Disease Study that suggested that people with early signs of macular degeneration benefit from taking vitamins including Vitamin E, and Vitamin C, and beta-Carotene, and zinc. At the conclusion of that study, it was recommended, actually by the Director of the National Eye Institute, that everyone over the age of 50 should have a checkup, have an eye exam, because the very earliest stages of macular degeneration don’t cause any symptoms.  People might benefit from taking vitamins even before they have any symptoms at all. So it is worth having a complete eye examination where the doctor looks at your retina to see if there are any early, early signs that you might not be aware of even at all.  

However, once you have been diagnosed with macular degeneration or if you think you might start to have macular degeneration, then the people that are at risk for that disease are: people that might have had other family members with macular degeneration, people over the age of 65, people who smoke or used to smoke are at increased risk, and people who have sort of light-colored eyes are at particularly great risk of macular degeneration.

There is a test that can be done at home to help you monitor your vision—and this can be found on the BrightFocus Foundation website—which is a test called the Amsler Grid. If you go to see an eye doctor and the doctor sees signs of macular degeneration in your eye, oftentimes the doctor will send you home with a little piece of paper or a little magnet that goes on your refrigerator that looks like a checkerboard, but it doesn’t have any black or white squares, it’s all just a grid of black lines on a white background or sometimes white lines on a black background with a dot in the middle of the square. That is called an Amsler Grid. That test is used by having people look with one eye at a time, cover one eye and look with one eye, and look at the dot in the middle. By looking at the dot in the middle, people should see straight lines in a grid pattern going back and forth and up and down. If at any point they look at the grid and they see that the lines are missing, or bent, or distorted, those are some signs that macular degeneration might be changing or that you might be developing macular degeneration.

If you do observe any of those changes, it is very important to contact your eye doctor, let the doctor know that you’re seeing changes, and the doctor will want to see you within the next day or so. You will then also do the same thing with the other eye, one eye at a time. Be sure to cover one eye because sometimes people will have vision loss in one eye and not even realize it because the other eye is compensating. So that’s a good at-home test that either your doctor can provide to you or you can download right now from the BrightFocus website. I’m looking at the link right now. So you can download it, and there are some instructions about what it is used for there on the website as well.   

GUY EAKIN: Great. We actually had another question quite similar from Donna from South Carolina. So I hope that response addressed your question as well, Donna. Mary from Illinois is writing in, and this is a little bit different, but it relates to diagnosis. She was diagnosed with a posterior vitreous detachment. That is a complicated word, but what does that mean? And what should she do about that? 

DR. JACQUE DUNCAN: Okay, well a posterior vitreous detachment simply means—it is a little complicated—but what it indicates is the following. Everyone’s eye has jelly inside of it that fills up the substance of the eye that is present when we are born. It sits behind the lens, behind the front of the eye, and it fills the eye. When we are born, that vitreous jelly, the jelly is called vitreous, when we are born, that jelly is connected to the retina in a lot of locations, and it is all kind of connected to the back surface of the eye.

As we get older, the jelly becomes a little bit less like Jell-O and a little bit more like marmalade in that it starts to separate into different components.  Sometimes people will notice little dots floating around or little strands or squiggles that move when they try to look at them by moving their eyes around. At some point, the strands and spots separate enough from the watery part that the whole jelly becomes detached from the back surface of the eye, and when that occurs, that is called a posterior vitreous detachment—posterior meaning back of the eye, detachment meaning that’s what its pulled away from, and vitreous meaning the jelly.

So, that happens to everybody at some point in their life. It happens earlier to people who are nearsighted or who might have had an injury to their eye or surgery on their eye, but it happens to everyone at some point. Most of the time it doesn’t cause any problems at all, it is sort of a natural part of aging. However, once in a while when that jelly pulls away from the back of the eye, it will take with it a little piece of the retina and cause what we call a retinal tear. That is sometimes accompanied by a perception of a bunch of little spots or floaters, an increase in the number of floaters—a dramatic increase, like a whole burst of them. It will also sometimes cause people to see flashing lights, like fireworks going off in one of their eyes, and finally, it may cause some difficulty with side vision.

So if people notice a dramatic increase in the number of floaters that they see floating around when they try to move their eye to look at them, a new perception of flashing lights like fireworks going off in their eye, or side vision loss, it is very important to see an eye doctor to have an examination—especially a very complete examination of the retina—to make sure that when that jelly came loose from the back of the eye it did not cause a retinal tear. A retinal tear could put you at risk for problems and vision loss but if it is identified very early, it can be treated with lasers such that further vision problems are prevented.

GUY EAKIN: That’s great. So this idea of when do we come in to seek a professional’s guidance came up again from a woman named Cynthia from Tennessee, who is asking, how does one know when your macular degeneration is changing from dry to wet? Maybe, Cynthia, if you would give me the permission to bend the question just a little bit…Jacque, could you walk us through the various stages and what are the things that I might notice that would prompt me to seek medical attention from you maybe earlier than what had been my next scheduled visit?

DR. JACQUE DUNCAN: Great question. The first stages, the earliest stages, of macular degeneration are characterized by little deposits under the retina that are known to medical professionals as drusen. If we see these little bumps under the retina called drusen, then we would be confident, most of the time, that a person had macular degeneration. Certainly in someone over the age of 50, when we see drusen, we are confident that that is the right diagnosis.

Initially, drusen don’t necessarily cause any vision problems at all or even any symptoms. However, sometimes over time as the disease progresses, the drusen can get larger and there can be more of them. Sometimes they can join together to form larger collections of deposits. When that happens, sometimes people will perceive changes in their vision. Either they will notice distortion, such as straight lines appearing curved—which is where the Amsler Grid becomes a very handy tool because it provides you with a very set collection of lines that you can look at. If you notice a change in those, that could indicate that the macular degeneration is changing as well.

Other things that can happen when those drusen get more numerous and come together and coalesce—we call it coalesce; that just means that they group together and clump together sometimes—they can either cause distortion in the vision all by themselves or they can sometimes cause the cells that overlie them (the cells that live next to them which are the vision cells, responsible for helping us to see) to disappear and die. When that happens, sometimes people will notice an area on the Amsler Grid where the lines are not present. They will see a break in the lines or the lines may be missing.

Sometimes, when this progresses to a more advanced stage, people will perceive, they will be able to read a lot of letters on the chart, but they may have patches in their vision where they don’t see very well—like holes like Swiss cheese that make it very hard for them to read because they can see letters, but then there are gaps in their vision. That sometimes happens when the macular degeneration is still in a dry stage but has caused some death of the vision cells. We call that a condition known as geographic atrophy. So that’s the dry advanced stage of macular degeneration.

Sometimes, people don’t develop that, but instead the little bumps, or deposits, or drusen, cause irritation to the underlying tissues such that new blood vessels grow under the retina. When the new blood vessels develop under the retina, that’s known as the wet form of macular degeneration, and we have pretty effective treatments for that form of the disease if they are given relatively early in the disease progress. Similarly, when the new blood vessels grow, often the patient will notice distortion or blots in the grid where they just don’t see very well—there can be areas where the lines are no longer straight and clear but instead are distorted, missing or blurry.

So, if you ever notice changes in your vision in one eye or both eyes, but certainly testing one eye at a time, in that Amsler grid, it is worth contacting your doctor because your doctor can take a look at your eyes and take some special pictures to know whether you have drusen; whether you have drusen that are collecting together; whether you have drusen that are collecting together and causing death of the overlying cells—or geographic atrophy—or whether you have drusen that have caused the birth or development of growth of new blood vessels under the retina. When those new blood vessels grow, the doctor may recommend a treatment to make the blood vessels shrink and go away and not cause as much vision loss as they might otherwise without treatment.

GUY EAKIN: Thank you. There is an amazing amount of things happening inside of the eye. Certainly, your take home there was that any changes, if you start seeing distortion that wasn’t there before, or blotches, or missing patches, and especially if you are testing one eye at a time and you are seeing those, then that is your cue to go see Dr. Duncan or your nearest eye care professional.      

I hope that helps you, Cynthia.

One of the things that you talked about is that a doctor spends a lot of time looking in the eye, and one of the things that amazes me is that there are many diseases that you think have nothing to do with the eye but are actually visible through the eye. Can you speak to that and tell us, when a doctor is sitting there looking in your eye, how is it that they can see what might be happening with your liver or other areas of your body?

DR. JACQUE DUNCAN: Right. Well some people say that the eye is the window to the soul and in some ways that’s true. The eye, because it enables us to see, by its very design is a clear structure and it gives the doctor an opportunity to see what is happening inside your body in a very nice way without having to take any special pictures, or do surgery, or anything else. We can just look right in and see a lot of manifestations of different problems that can affect the rest of the body.

An obvious one is diabetes. People with diabetes often have very few symptoms—sometimes, very few clear indications that they have had any problems from their diabetes—but because the eye is so readily accessible and so easy for us to examine, sometimes the earliest changes that are complications of diabetes can be seen by a doctor looking in the eye.

Lots of different medical conditions and different medications that people take can cause features that we can see when we look in the eye. For patients who are treated with medicines to reduce inflammations in their body, like steroid medications which are used to treat a number of different diseases, those medications can sometimes cause the lens to not be clear anymore or a cataract to develop, and they can sometimes cause glaucoma—which I know is another disease that the BrightFocus Foundation is interested in understanding better. If patients are treated with steroids for long periods of time oftentimes their doctors will recommend that they get an eye examination to make sure that they are not developing either cataracts or glaucoma, which they might not even be aware of.

Other medications that sometimes affect the retina are also used to treat inflammatory diseases, like Plaquenil or Hydroxychloroquine is a medicine used to treat arthritis that can sometimes cause changes in the retina that can sometimes look a little bit like the dry form of macular degeneration. So, truly there are a very large number of medical conditions that cause things that we can see in the eye, sometimes even earlier than other places. It becomes a very important part of a complete physical exam sometimes for certain diseases because it helps the doctors to better understand what is going on when the eyes are so easy to examine in the clinic.  

GUY EAKIN: Well, thanks so much. Let’s go to another question. We have a woman named Mary from Oregon asking a more therapeutic question about dry macular degeneration. Are there any new treatments that might be similar to treatments for wet macular degeneration? What do we have for dry these days and what is on the horizon?

DR. JACQUE DUNCAN: Terrific question. So, dry macular degeneration is really an active area of research. We have—as the caller or questioner correctly stated—we have developed treatments that are very effective for the wet form of macular degeneration, and they have been really a huge advance in ophthalmology. For a disease that used to cause vision loss almost 100 percent of the time, now we have treatments that can slow that vision loss and reduce the chances that people will lose their vision at all when people develop blood vessels under the eye. In that situation, there are vessels that we can tackle with a particular medicine or protein that causes the vessels to form. That’s sort of a very active area of treatment that has been incredibly successful.

Our success in that field has led people to try and address the more challenging problem of vision loss caused by dry macular degeneration. When vision is lost without new blood vessels growing, for people with macular degeneration the belief is that the way that happens is that the deposits that live under the retina, the drusen, cause the vision cells that lie on top of them or right next to them, to die. It isn’t entirely clear why that happens. Some people think it’s because the deposits prevent them from getting as much blood and oxygen as they need to from their blood supply; other people think that there is something kind of harmful within those deposits that hurts the vision cells and causes them to die.  there are a lot of different possible explanations for why it happens and that is a very active area of research in a lot of basic science and translational science labs across the country.

If we better understood why the vision cells had to die, we would probably be better at developing treatments to prevent vision loss from occurring in the dry form of macular degeneration. Some of the strategies, which again are not FDA approved or available in the clinic right now, but which are being studied as possible treatments in the future on a research basis, include: treatments to reduce the accumulation of these deposits; treatments to prevent the cells from dying either just by keeping neuronal cells—like vision cells—alive longer, or by interfering with their death by interacting with proteins that are necessary to cause them to die; and finally, an important area of research is trying to restore vision that has already been lost.

Once the vision cells have gone away, it might be possible to bring back some of that vision if you could put new cells in to replace them. This is being investigated in a couple of ways. One is by trying to put new cells that live under the retina, called RPE cells, in locations where the vision cells have gone away. That’s one thing that is in clinical trials right now. Other things that are a little farther off on the horizon would be therapies that might allow us to replace the vision cells that have gone away—either by putting new vision cells in there or causing some of the cells that haven’t gone away, that still live within the retina, to turn into vision cells, or become light sensitive through a field called optogenetics.

There is an incredibly large amount of research being done in this field right now, and it’s a very exciting time to increase our understanding of this disease. Right now, we are still at a stage where we don’t have treatments that have been shown to be safe and effective in slowing down that vision loss, except for vitamin supplements, which are likely to reduce the changes that the vision will be lost in the first place—I mentioned those a little earlier. It is certainly an incredibly active area of research that I think is going to yield very exciting treatments in the next several years.           

GUY EAKIN: The operative word here is the necessity for the research that is coming along, and certainly, I know that for the BrightFocus Foundation we have a significant portion of our portfolio that goes directly to this dry macular degeneration understanding and treatment. For what we have right now, for the callers on the line that might be experiencing dry macular degeneration, we have the vitamin supplementation. What should they be looking for when they go through their pharmacy picking out the vitamins that claim to help vision? What would you ask that people look for on the label?

DR. JACQUE DUNCAN: Well, okay, so this is a little bit of a complicated question. So we mentioned earlier that people with macular degeneration who smoke have an increased risk of vision loss and increased risk of macular degeneration. So for people who smoke, the first and most important thing they can do is to stop smoking. That’s an important take-home message. However, even after they stop smoking, some of the vitamins that have been shown to be helpful in slowing down macular degeneration or reducing the risk of vision loss for macular degeneration, might be harmful to people not only who are still smoking but who have also smoked in the past.

In general, people should look for vitamin pills that say they have the vitamins that were studied in the AREDS study, which is A for Age, R for Related, E for Eye, D for Disease and S for Study. AREDS—Age Related Eye Disease Study. That was the study that found out vitamin supplements reduce the chance of vision loss and slow down the rate of progression. So that’s the first step. Everyone should look for those vitamins.

However, people who smoke or who used to smoke, should look for a smokers’ formulation of those vitamins. It has been found that the beta-Carotene in the vitamins that were studied in that Age Related Eye Disease Study might be harmful to people who smoke or those who used to smoke. So there is another version of those supplements for smokers that uses a related vitamin called lutein instead of beta-Carotene.

It’s kind of a long answer. You have to be a little bit discriminating when you are looking at vitamins to make sure you are going to get ones that have shown to be helpful in slowing down vision loss. It also depends a little bit on what kind of person you are. If you are someone who used to smoke, you want to make sure you take the ones that are not going to cause you additional harm because of high doses of beta-carotene in them. If you are not someone who used to smoke then you should take the regular Age Related Eye Disease Study vitamin cocktail because that was the thing shown to be most helpful in reducing the rate of vision loss.   

GUY EAKIN: For those questions that have a lot of detail that are either long or have some hard words, I do want to remind people we will have a transcript and also there are audio files available for you if you call into the Foundation at 1–800–437–2423 or visit BrightFocus.org. Give us a week or two and we will have the transcript and the audio file up, but we do have people on staff who would be more than happy to repeat some of the information that came across here if you missed it the first time around.

Just as an operational thing, I do want to remind people that if you want to ask a question you need to hit that star on your telephone before you hit the number 3. That will get you to someone who can take down your question for you.

Let’s move. We have Audrey from Ohio who is asking, she’s had dry macular degeneration for about 20 years, and it has turned wet in one eye, and subsequently she had cataracts removed, and for a while everything was pretty clear, and then all of a sudden the eyesight became foggy. That may be a hard question, but is there any help or information you could give Audrey about this?

DR. JACQUE DUNCAN: Well, I would recommend that Audrey see her eye doctor because there are a couple of reasons why vision can become cloudy after successful cataract surgery in patients with macular degeneration. The loss of vision after successful cataract surgery could be as simple as a little scar tissue forming behind the place where the new artificial lens was put. So it is something called posterior capsular opacification. When they take the cataract out, they put a new lens in place of the cataract, and they put it in a little bag that used to contain the original lens. That sometimes gets cloudy. That can be very easily diagnosed by your eye doctor and treated with a laser that might restore some of the clarity that you experienced right after the cataract surgery.

Another possibility is that the macular degeneration has gotten worse. Certainly if you have the wet form of macular degeneration, and you’ve been told that you have the wet form, it’s still, and perhaps even more important, to use that Amsler Grid because at any time—and whether or not you have had cataract surgery—you still have a chance of having those blood vessels grow under the retina and require additional treatment.

So, I would look at the Amsler Grid to see if there have been any new changes, and I would ask your doctor to take a look because it may be something very easy to treat, such as a laser to the new lens that was placed or, it may be that you need treatment for the wet form of macular degeneration. Both of those things are easy to treat if you see your doctor. I would suggest going to just get a checkup and make sure exactly what the cause of your new cloudy vision may be.  

GUY EAKIN: It looks like we probably have time for one more question here. We have a question that Allen is asking. Once a person is diagnosed with macular degeneration, what resources do you recommend to help the person cope with the condition? I guess I would include in that support groups, low vision—what do you recommend to people?

DR. JACQUE DUNCAN: Wow, yeah that’s another great question. There is a lot of information on the BrightFocus website that I think is really helpful. For starters, I would visit the website because there is a lot of very helpful, very useful information there.

I also think, as you mentioned, it is very important for people who are recently diagnosed, or who are going through changes in their vision as a consequence of macular degeneration, I recommend that they be referred to a low-vision specialist if there is one in their area. A low-vision specialist is an eye doctor who spends all his or her time working with people whose vision cannot be corrected to 20/20 or perfect for any number of reasons. That specialist will spend time with you learning more about the challenges you are having, learning more about the visual need that you have in your life, and will make you aware of strategies and adaptive technologies that will help you make the most of the vision that you have.

Also, I think that support groups are really helpful. Sometimes there are groups that you can identify, maybe through BrightFocus. There are other foundations that can also connect you with other people who are coping with vision loss in your area. Sometimes the Lighthouse Foundation will have support groups specifically for people who are coping with macular degeneration.

I also work with therapists. There are a couple of counselors and therapists specifically trained to help people who are coping with vision loss. Sometimes that can be very helpful, just having a trained professional, who can answer your questions and listen to some of the challenges you are experiencing, can be very useful in terms of just helping you cope with these very new and frightening changes that can be going on as you are being given a new diagnosis, or coping with changes in your vision as they occur.       

GUY EAKIN: Thank you. It certainly is scary for many people, which is why we hope to have this monthly chat series to get some of those questions addressed. That’s all the time that we have for the questions today. I really want to thank Dr. Duncan so much for taking the time to speak with us today, and certainly to all of the callers who asked questions, and all of the people who were out there listening. We will be, as I mentioned earlier, posting a recording and a transcript of the call on our website, that’s BrightFocus.org, and you can also listen and download the past chats through iTunes and SoundCloud.

The next chat we are going to have is going to be on Tips for Protecting your Vision. That will be on Wednesday, July 30th, at 1 p.m. EST, 10 a.m. PST. We certainly encourage you to register and submit questions in advance, and we will send you an email reminder if you registered on this call.

We talked about Amsler Grids today. You can call in to that number again, 1-800-437-2423, or go to our website for copies of Amsler Grids. We have it in your favorite color, as long as your favorite color is white! And you can also register for that July chat right now.

We’d love to get your feedback on these chats by asking you one short question. If you’ve participated in this call before you probably know the drill. You can use the keypad on your telephone to rate the chat that you just heard. We would appreciate if you press 1 for “very helpful”; 2 for “somewhat helpful”; and press 3 for “not helpful at all,” we need to do something else. So that again is: 1 for “very helpful,” 2 for “somewhat helpful,” and 3 for “we have some more work.” While we’re doing that, again I’d like to thank Dr. Duncan, and we will be closing out in just a second, but these BrightFocus Chats are held on a monthly basis. To find out more just give us a call. Thank you everyone for your feedback. If you’d like to leave us a comment after the call just stay on the line. Thanks from everyone here at the BrightFocus Foundation: Have a great day. We will talk to you another time.  

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.