Living with GA
If you’re struggling with vision changes and you’re thinking ‘I’m the only one.’ I‘m here to tell you that you are not alone.
— Henry Winkler
Click on the video icons to hear from others living with or helping diagnose GA
Learn about GA from Retina Specialist, Dr Holekamp
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The following video was developed by Apellis Pharmaceuticals, and the patient was compensated by Apellis to share his story. It contains the views, opinions and experience of Rob, a person living with Geographic Atrophy (GA). The video does not include individual treatment or medical advice. You should consult your doctor for medical advice or about any questions and concerns you have about living with GA.
Geographic Atrophy (GA) is the advanced form of Dry Age Related Macular Degeneration (Dry AMD). GA is a leading cause of blindness that affects 5 million people worldwide.
Boyer DS et al., Retina 2017
VO: I actually woke up in the middle of the night, laying there on the pillow, cracked an eye open and looked at the LCD clock alongside of the bed. And the top of one of the numerals was kind of blinking on and off. So now I'm kind of up off the pillow with both eyes and the clock is just fine. Lay back down and the same thing happens. I'm going, “It's not the clock.”
And so right away I made an appointment with the ophthalmologist to see what's going on here. So, we go through the process, and he does all his tests and the bright light thing and everything and he says, “You have AMD.” I learned there are two types of it. That I have the dry type, not the wet type.
Nothing really started to go bad until about two years in. I've gone from not seeing the little bitty LCD light on a bedside clock to not driving a car and having trouble writing a check to not seeing your head in front of me.
Life is not set up for us who don't drive. I rely on mostly my friends to get around, to go to the grocery store. Grocery stores are difficult because you can't focus easily on a particular item. There are a lot of times I'm going down the aisle like this. I had to learn how to survive. And luckily my friends all have kicked in. I have awesome friends.
So, life has gotten more narrow I guess would be the way to put it. My life is slowly changed and stuff I really, really enjoy doing is going away. When it comes to golf, I think what is going on is I'm not really seeing the golf ball, but a little bit of light is still getting through in that area. Is that little light spot going to go away?
There's no amount of money I could spend. There's no amount of exercise I can do. There's just nothing I can do, so it's very hard to stay optimistic, but it's like, life goes on. Hope comes from reading about the research that is going on and I know there's some good progress being made—some really good progress. So that's good—that's hope. A lot of people have a lot rougher life than I do, and I try to keep that in mind. (Cheers!) Unlike some people I'm not getting up at six in the morning to go to work every day, so that's optimistic all by itself.
The following video was developed by Apellis Pharmaceuticals, and the patient was
compensated by Apellis to share her story. It contains the views, opinions and experience of
Santi, a person living with Geographic Atrophy (GA). The video does not include individual
treatment or medical advice. You should consult your doctor for medical advice or about any
questions and concerns you have about living with GA.
Geographic Atrophy (GA) is the advanced form of Dry Age Related Macular Degeneration (Dry
AMD). GA is a leading cause of blindness that affects 5 million people
Boyer DS et al., Retina 2017
VO: For me, even as a little girl, I was so visual—and I would just thank God just for
everything I could see. I'm so amazed at things that are beautiful, and did I know that
somewhere down the road I was going to get this diagnosis? I don't know.
I have Geographic Atrophy in both eyes. Getting this diagnosis terrified me. I was afraid to
go to sleep. I didn't want to wake up and have lost the world. And I think we all get
challenges in life, this was mine.
And when the Geographic Atrophy hit, it went down fast. And then things started to disappear,
like a phone pole would be crooked and there'd be parts of that pole that I wouldn't see.
And then I was legally blind. I've always been very independent and very visual. To think of
missing that bird that's at the feeder or the bunny that crosses the street. If I couldn't
walk my dog.
Going downstairs is very scary because of the depth perception. I fell down my stairs here
very badly. I immediately tried to minimize it, but I couldn't get up. I was really hurting.
I thought, “there's going to be a day when I'm not going to be able to drive.” I sold my
house. I moved where I could walk everywhere. You know, all these things to try to
troubleshoot but the hard part was the emotional part.
I have to feel useful. I started to go to this orphanage and just working with the kids,
talking to them, I started to feel such a sense of peace. I was always the helper. I was
always the one taking care of people. I have to find that middle road of being able to ask
for help with grace and appreciation.
I hope that it doesn't come to the point where I don't see it. You know, I don't want to miss one sunrise. In every challenge I've ever had, there's always been a gift that hasn't been apparent right away. But if there always has been, I'm assuming there always will be.
The following video was developed by Apellis Pharmaceuticals, and Dr Holekamp was compensated for her time. This video is not intended to include medical advice. You should consult your doctor with any questions or concerns you have about Geographic Atrophy (GA).
VO: My name is Nancy Holekamp, I am a retina specialist in St. Louis, Missouri, and today I'd like to talk to you about Geographic Atrophy, or GA.
When I speak to my patients about GA, I tell them it is a very advanced form of age-related macular degeneration and the most important risk factors are age and genetics, so family history matters, but other risk factors include diet and obesity.
To be clear, age and family history are the leading risk factors for GA, so you have to have both age and the genetics in order to get GA.
To explain GA, I often show patients their scan like the one you're seeing now. And here we see little accumulations of waste products called drusen that accumulate in the macula. The macula is just a fancy word for the center of the retina which is the center of your vision. In an eye with GA, the drusen are always growing closer to the center point of vision, which means the GA is always growing closer to the center point of vision.
So as the drusen grow and enlarge, then collapse into atrophy, they will form regions that you can actually draw a line around, almost like a geographic area or a map, and that's why we call it Geographic Atrophy.
Atrophy means cell death, so the cells in your retina are slowly dying. Early on you may not notice any change in your vision, but as it progresses it will eventually affect your central vision. Please keep in mind that while you may never lose peripheral vision, GA does cause irreversible vision impairment.
What you're seeing on the screen right now is an example of a scotoma or a blind spot that will affect your vision over time. But this is just an example; each person experiences GA differently.
While your central vision may be impacted, you should always maintain the ability to move around and take care of basic needs.
However, you may need to make significant life changes and ultimately depend on others for things such as driving. Getting a proper diagnosis of GA is very important. A diagnosis leads to prognosis, which helps you understand how this disease will affect you over time.
Science is learning more and more all the time about GA, and we are becoming more knowledgeable about this disease.
If you have vision symptoms, be sure to call your eye doctor who may refer you to a retina specialist. Seeing a doctor is critical.
The following video was developed by Apellis Pharmaceuticals, and the patient was compensated to share her story. It contains the views, opinions, and experiences of Susie, a person living with Geographic Atrophy (GA). The video does not include individual treatment or medical advice. You should consult your doctor with any questions or concerns you have about living with GA.
VO: Hi, I'm Susie, I'm from St. Louis, Missouri. I'm a retired university professor, physical therapist, now an education consultant. I'm a mother, a wife, a grandmother, and I have geographic atrophy.
I was diagnosed with age-related macular degeneration in 2005 and advanced to a diagnosis of geographic atrophy, or GA, in 2014.
I wasn't familiar with the terms GA but my mother had the condition and she was quite impaired in her later years; she lived to 98.
I have learned so much about GA since I was diagnosed and there are two critical things to know.
One is early diagnosis is really important and the second is the disease is progressive and it will get worse over time.
The very first thing to do after a diagnosis of GA is to ask your doctor to show you the scans of your eyes. If you're not seeing the scans every time you go to the doctor I suggest that you ask to see them, both sides and the comparisons from previous visits.
My doctor reassures me regularly that although GA is a progressive disease, I won't lose my vision quickly. I may lose considerable central vision over time.
One of the things that I do to test my own vision is cover my right eye, which is my strong eye, and then I look at certain things that are familiar to me. So when I do that here, the camera is now blank, but I can see there is a camera.
It's really important to mention proactively any changes you see to your doctor. I'm really fortunate to have my doctor who explains the condition and the science behind it very simply to me and very regularly. You and your doctor aren't the only ones who should talk about the diagnosis of GA. It's an invisible disease to everyone around you, so talking with your family and friends about your needs is very important after the initial diagnosis.
And this is an adjustment that I think people should make—plan ahead for loss of vision. It's very important to plan ahead and not lose hope.
For example, I've been memorizing the feeling of the fabric of my clothing for when it may be more difficult to identify their colors.
So stay positive, stay engaged. Always keep in touch with your retina specialist if you have
concerns about your vision or GA.
How to talk about GA
Talking to your eye doctor and family about GA is important. Here are some tips to start the conversation.
Keep track of vision changes. For example, make note if you start to have trouble driving at night or need more light when reading.
For an easy way to help track vision at home, get the Amsler GridView the Amsler Grid
Tell the whole story
Talk about how vision changes are impacting your life and ask about available resources to help.
Be open and communicate
If you have been diagnosed with AMD or GA, changes in your vision can mean that your condition is getting worse. Talking to your eye doctor can help them to better monitor your disease.
The Doctor Discussion Guide can help you organize your thoughts and prepare for the next visit with your eye doctorView the Doctor Discussion Guide
Vision changes can make many daily tasks harder or even unsafe. Take time to talk to loved ones about things that are becoming difficult and come up with a safe plan for moving forward together.
Bring them along
Just as vision changes may leave you feeling nervous or anxious, your loved ones may be experiencing similar emotions. It can help to attend eye doctor appointments together, so you can both ask questions and hear important answers.
If your loved one is experiencing vision changes:
Talk to them
Communicate with your loved one about their vision. If they are experiencing changes in vision, having trouble with daily tasks like driving at night or reading, or even tripping and falling more often, it’s important to encourage them to talk to their doctor.
For an easy way to help track vision at home, download the Amsler GridView the Amsler Grid
Check in on their well-being
Changes in vision can be frustrating because people may feel like they’re losing independence. As their disease progresses, they may have trouble with daily tasks or recognizing faces. Let them know that you are there to support them through every step of their journey with GA.
Explore tips to help you and your loved one with emotional healthLearn more
Your loved one may need to rely on you to describe things they cannot see properly or read. They may also need you to help with daily tasks as their GA progresses. Keep reading to explore some ways you and your loved one can make home life easier and safer.
Life at home with GA
Daily tasks can become more difficult as Geographic Atrophy (GA) progresses and vision changes.
Fortunately, there are many ways to change your living space to help you adapt to living with GA.
The overall lighting in your home should be bright and consistent throughout.
Here are some of the ways to help achieve this:
- Place several lights around each room so all parts of the room are visible
- Open curtains to take advantage of natural daylight
- Install vertical or roller blinds to control the glare from outside light on TVs and other electronic devices
- Keep stairs and hallways well lit and free of area rugs and clutter to help prevent falls
- Use extra lighting when you need to focus on things like reading and cooking
- Consider painting your walls a pale color that reflects light in the room
Many electronic devices have accessibility features that can make them easier to use as your vision changes.
- Settings to increase text size, color, brightness, magnification, and change backgrounds to black with text that is easier to read (dark mode)
- Screen readers and speech-to-text functions that read and write text for you
Smart devices with built-in voice assistants can help around the home, responding to a
variety of commands, such as:
- Playing audiobooks, music, or podcasts
- Changing the lighting and thermostat
- Calling for help
- Large print items for the home are also widely available as an alternative to smart devices
Other ways to make living at home more comfortable
Simple changes to your home can make a huge difference. Consider making some of these changes below to help you find what you need more easily:
- Use different colors to make household appliances and utensils stand out
- Mark your most used settings on appliances with raised stickers
- Label important items in large print
- Organize frequently used items by always keeping them in the same place
- Use nonslip rugs or remove rugs and mats throughout the home to prevent falls
- Declutter stairways and hallways to avoid tripping
You’ve got to keep your cup not only half full, but three quarters full to fill some of their cup and keep their spirits up. — Henry Winkler on caring for your loved ones
Taking care of you and your eyes
Taking care of your emotional health is an important part of learning to adapt to life as your vision continues to change.
When you’re dealing with vision changes, it’s normal to feel anxious and fearful about what the future may hold. Relaxation methods like breathing exercises and meditation can control your body’s anxiety response and help you think more clearly.
You are not alone.
In a global Geographic Atrophy Insights Survey (GAINS) (N=203), conducted by The Harris Poll and sponsored by Apellis Pharmaceuticals,
46% of people felt anxious about their diagnosis
82% felt fearful about their future
According to American Macular Degeneration Foundation, following a Mediterranean-style diet with healthy ingredients can be beneficial for your overall eye health. Eating the following foods can help:
Dark leafy greens