Whether you’ve just been diagnosed with diabetic macular edema (DME) or you're simply worried about changes in your vision, you’re probably nervous. That's normal; after all, it's scary to think about something that might affect your eyesight. But we are here for you. Arm yourself with knowledge about what caused your vision changes, what to watch out for, what to expect at your eye doctor visit, and much more. Because once you understand what's happening inside your eye, you'll understand that the damage that's causing your vision changes can be stopped—and, in many cases, even reversed. We’re sure you’ve got a lot of questions...and we’re here to answer them.
We went to some of the nation's top experts in DME treatment to bring you the most up-to-date information possible.
Michelle Liang, M.D.Ophthalmologist
Abdhish R. Bhavsar, M.D.Spokesperson for the American Academy of Ophthalmology and President and Director of Clinical Research
Jennifer Sun, M.D.Associate Professor of Ophthalmology
What Is Diabetic Macular Edema, Anyway?
Before you or your loved one began having vision changes, you probably didn't know a macula from a spatula. Now, though, you're likely well aware that the macula is like the bullseye of the retina, the photo-sensitive tissue that lines the back of your eye: It is right in the center, and it’s the most light-sensitive.
The macula is responsible for our central vision (as opposed to peripheral vision) and allows us to see fine detail, color, and faraway objects. So, if anything affects the macula, it will almost always affect your eyesight.
The word edema means swelling, so macular edema is when there is a build-up of fluid in the macula. This swelling distorts your vision much like a funhouse mirror. Depending on the severity or exact location of the edema within the macula, your vision could range from blurry to distorted to a complete blind spot.
Understanding Your Vision With the Amsler Grid
If you've noticed changes in your central vision, try this quick test at home. It's called the Amsler Grid and it's just what it sounds like: a grid of tiny boxes with a dot in the center.
Look at that center dot with each eye separately (wear whatever corrective lenses you normally use) from a distance of about 14 inches. When testing the right eye, make sure you cover the left eye and vice versa. If you notice any distorted or wavy lines, blank areas, or dark spots, mark them on the grid and bring it with you to your eye exam. This can help your eye doctor understand how your vision might be affected by macular edema or other eye conditions.
Diabetic retinopathy, the presence of abnormal blood vessels in the eye due to high glucose levels, is the most common cause of macular edema. Nearly eight million Americans live with diabetic retinopathy. Of those, only about 750,000 also have diabetic macular edema. That means that fewer than 10% of people with diabetic retinopathy will develop diabetic macular edema. Plus, healthy lifestyle habits can lower your risk and possibly bring your chances of DME down even further.
While DME diagnosis is not always preventable, there are ways to prevent further vision loss or even save your eyesight entirely. Read on!
What Causes Diabetic Macular Edema in the First Place?
If you are living with diabetes, you know that your body doesn't make enough insulin or doesn't use the insulin it does make efficiently. Without insulin, your body can't break down the sugars (also called glucose) from the food you eat. Instead, the sugar hangs around in your bloodstream since it has nowhere else to really go.
Over time, high sugar levels weaken and damage blood vessels. In your eye, these weakened blood vessels can leak fluid, blood, or lipid deposits into the retina. When the retina is compromised due to leaking vessels, it swells and the cells are unable to send accurate messages to the brain causing a distortion of the images we see. Diabetic macular edema happens when the swelling is in the macula or the center of the retina.
DME can happen at any stage of retinopathy, although it is more common and severe in the later stage known as proliferative diabetic retinopathy (PDR).
Macular edema does not cause any pain or physical sensation, so it's often not detected until it is more severe and has affected eyesight. Macular edema can affect both eyes or just one eye. If it only affects one of your eyes, it may take even longer to notice changes in vision. That's why it is so important to visit your eye doctor regularly.
Essentially, anyone with diabetes (especially uncontrolled diabetes) is at risk for DME. Here are the common signs and symptoms of diabetic macular edema:
Blurry or blocked central vision
Distorted or "wavy" central vision (called metamorphopsia if you want to impress your friends)
Seeing floaters or strings of floaters in your vision
Blind or dark areas or spots in your field of vision
Difficulty reading at any distance
Seeing colors as more washed out than usual
When to Call the Doctor
Call your eye doctor right away if you notice any of the above symptoms, of course. But call your eye doctor even if you don't, too! You should have at least one eye exam per year, maybe more if….
You have diabetes and become pregnant. You'll need to see your eye doctor once each trimester, or maybe even more, depending on the severity of your diabetic retinopathy.
You've been diagnosed with proliferative diabetic retinopathy (PDR), a more advanced and serious stage of that condition.
You have high blood pressure. Among people with diabetic retinopathy, those with an elevated blood pressure are three times more likely to develop macular edema than those who don't.
How Do Doctors Diagnose Diabetic Macular Edema?
Diabetic macular edema can be diagnosed through the same comprehensive eye examination that detected your diabetic retinopathy. What you can expect:
Visual acuity measurements to evaluate your central vision. If you haven't done so at home already, your doctor may have you look at the Amsler grid.
Dilation to evaluate the structure of your entire eyeball, including the retina and optic nerve. Yes, this is the test that includes that annoying, but painless, eye drop!
Tonometry to measure the pressure in your eye. Sometimes this is done with that funny little puff of air on your eyeball.
If your doctor suspects macular edema, she or he may do further testing:
Retinal or fundus photography to get a close-up picture of the back of your eyeball.
Optical coherence tomography to get a high-resolution, cross-sectional image of the retina to see if there is macular edema.
Fluorescein angiography to evaluate blood flow through the retinal vessels and check for blockages and/or leakage. A yellow dye (called fluorescein) will be injected into a vein and then a camera takes photos of your retina as the dye travels throughout its blood vessels.
How Can I Prevent Diabetic Macular Edema?
If you have diabetes, a pre-existing eye condition, or have had an eye injury, you can't always prevent macular edema. (If you are at risk for diabetes or are pre-diabetic, however, you can; follow the nutrition and lifestyle recommendations from your health care provider to avoid developing diabetes in the first place.)
But with regular eye exams and good control of your blood sugar if you have diabetes, you can delay or halt vision loss—or, yes, avoid it altogether! What works best: these healthy lifestyle habits that can help keep your eyes—and your entire body—in their best shape.
Visit your eye doctor.
Since you may not notice any symptoms before you start to lose vision, make sure to get an eye exam at least once a year. Your doctor may request to see you more often depending on the presence and severity of disease and whether or not you need treatment.
Keep your blood sugar level under control.
Take your oral diabetes medications or insulin as directed.
Check your blood sugar level several times a day (ask your doctor exactly how often). Remember, if you're sick or feeling stressed, you may need to measure your level more often.
Ask your doctor about a glycosylated hemoglobin test (also called a hemoglobin A1C test). This test shows your average blood sugar level for the previous three-month period, which can give you a great idea of how well you are managing your blood glucose. The American Diabetes Association recommends people with diabetes keep their A1C levels under 7%.
Stop smoking or don't start.
Ask your doctor for help quitting. Smoking increases your risk of diabetic retinopathy, age-related macular degeneration, and blocked retinal blood vessels. All those toxins damage the eyes’ tiny vessels.
A meta-analysis from the American College of Sports Medicine and the American Diabetes Association found that 150 minutes of moderate-intensity exercise per week should be the goal for people with diabetes. It sounds like a lot but think of it instead as about 30 minutes five days a week. You can even spread it out to 15 ten-minute bouts per day. Best part: Brisk walking counts!
Try not to go more than two days between exercising. Otherwise, the glucose-metabolizing effects of physical exercise will wear off.
Add more unstructured movement to your day, too: Take the stairs instead of the escalator at the mall, stand at your desk for an hour a day, stretch while you're watching TV. These simple changes can greatly increase what the experts call your "non-exercise activity thermogenesis," or the number of calories you burn in daily living, which can have a huge impact on preventing weight gain.
Follow your doctor's nutritional guidelines but, in general, avoid junk and fast food and try to eat more fresh fruits and vegetables, especially dark, leafy greens such as spinach, kale, and collard greens.
One study found that a diet high in omega-3 fatty acids could be protective against the development and progression of diabetic retinopathy and macular edema—three cheers for salmon and tuna sushi!
Try to limit the amount of alcohol and caffeine you drink, too, but—don't worry—you don't have to give up your morning cup of coffee or Friday night cocktail completely.
It is always useful to get the help of a nutritionist recommended by your doctor.
Lower your blood pressure.
High blood pressure is a risk factor for blocked retinal arteries, which can lead to macular edema, so do your best to keep yours in check. Not smoking, exercising, and eating healthy will really go a long way in keeping blood pressure within a healthy range.
If lifestyle changes aren't enough to control it, though, talk to your doctor about possible medications to treat hypertension. By doing so, you could lower your risk of developing macular edema by more than three times.
Can Diabetic Macular Edema Have Serious Complications?
Left untreated, diabetic macular edema can cause permanent vision loss and blindness. Diabetic retinopathy and diabetic macular edema have also been associated with the possible development of other diabetes-related complications including nephropathy (kidney disease), peripheral neuropathy (nerve damage), and strokes.
But you won't let that happen! There are so many ways to get DME under control and stop vision loss in its tracks, or even reverse it. (Have we mentioned getting regular exams with your eye doctor yet?)
Can Diabetic Macular Edema Be Treated?
Yes! You may have heard that treatment for macular edema often includes eye injections. While that’s true, don’t let it stop you from seeking help. Allow us to reassure you of two things: 1. Treatment for diabetic macular edema should be relatively painless, and 2. Today's therapies are incredibly effective at halting—and often even reversing—vision loss.
Choices may include anti–vascular endothelial growth factor (Anti-VEGF) injections, steroid implants, and/or laser treatments. Sometimes, a wait-and-see approach may be recommended as the best course of treatment, too.
What’s Life Like for People With Diabetic Macular Edema?
Vision loss—even just the threat of it—is scary and stressful. You may want to share your feelings and frustrations with a therapist or a support group. Don't let your fear paralyze you and prevent you from visiting your eye doctor. There are treatments for diabetic macular edema.
If you do experience vision impairment or loss, adjusting to a new way of life can be difficult. Look for adjustment classes that offer training in the daily living skills you'll need to remain as independent as possible. You will likely be able to do everything you did before your vision loss, just in a different way. Look into vision aids that can help, too, including high-power reading glasses, telescopic glasses, light-filtering lenses, magnifying glasses, closed-circuit television, canes, and more. Your eye doctor can refer you to a low-vision specialist so you can get the best tools to help you see better.
Another source of stress when it comes to diabetic macular edema: self-blame. While there are ways to reduce your chances of the condition, diabetic macular edema can't always be prevented. So, stop beating yourself up and put your energy towards living as fully as you can. Repeat after us: It's not your fault!
Life with diabetic macular edema is also busy. People with diabetes typically have a mini-army of doctors, of which the eye doctor is just one. Managing so many appointments and treatment protocols is time-consuming! Working out a good calendar and reminder system can go a long way in helping you feel positive and in control.
If your eyesight is compromised, you will likely need to rely on family and friends to help get you to all those appointments. Don't feel guilty; everyone needs support sometimes. In the meantime, chip in for gas and sign up for a rideshare app/service for times when no one is available to drive you.
Where Can I Find Diabetic Retinopathy Communities?
While you may be new to this condition, there are many others who have walked this same scary new path. Maybe your doctor just mentioned it at your last diabetes appointment and now you can’t stop thinking about what life with this condition looks like. Or maybe you’ve been going down this path for a while and really just need to connect with someone who understands what it’s really like. That’s what this section is all about — real people, real stories, and real support.
Follow because: While the average age of someone who is diagnosed with diabetic retinopathy is over 40, Hana begrudgingly shows you that it can be a young person’s disease, too. Is it scary? Yes. Does she sugarcoat it? No. She’ll feel all the feels with you and takes you along on her journey.
Follow because: Dan is like the type 1 diabetes every-man — he has a podcast about it, he works for JDRF UK, he posts often about his journey, and shares really great additional people to follow in the community. Literally a one-stop-shop and must follow.
Follow because: It’s kind of in her name — she is so very real. About her journey with type 1 diabetes, a kidney transplant, and the work she puts into her eyes to make sure she doesn’t go completely blind. When she had to endure 20,000 laser burns per eye, many injections, and surgeries, she told that doubtful voice in her head that she CAN do this — which is just the inspiration you might need today, too.
Top Diabetes Retinopathy Support Groups and Nonprofits
American Academy of Ophthalmology (AAO). Stay up to date on the latest guidelines for getting back to your eye doctor appointments and learning about at-home treatments to hold you over. Get answers to your questions about living with diabetic retinopathy; and find an ophthalmologist in your area. These are just a few of the things AAO can do to help you manage life with diabetic retinopathy.
Lighthouse Guild. This fantastic non-profit is all about preventing vision loss. They can help you coordinate your care for eye health, including early detection of vision disorders (including diabetic retinopathy), vision rehabilitation, and vision-loss adjustment.
Vision Aware. An excellent resource, from the American Printing Foundation for the Blind, for learning to adjust to—and thrive with!—vision loss.
Frequently Asked QuestionsDiabetic Macular Edema
What is a macula?
The macula is like the bullseye of the retina, the photo-sensitive tissue that lines the back of your eye: It is right in the center and it’s the most light-sensitive. The macula is responsible for our central vision (as opposed to peripheral vision) and allows us to see fine detail, color, and faraway objects. So, if anything affects the macula, it will almost always affect your eyesight. Macular edema is when the macula becomes swollen or when fluid from damaged blood vessels leaks into this part of the retina.
If I have diabetic retinopathy, will I develop diabetic macular edema?
Not necessarily. In fact, less than 10% of people with diabetic retinopathy will develop diabetic macular edema. Plus, healthy lifestyle habits—keeping your blood sugar level in control, not smoking, and exercising—can lower your risk and possibly bring your chances of DME down even further.
How do I know when I should see an eye doctor?
If you have diabetes or diabetic retinopathy, you should visit your eye doctor at least once a year. And if you’re experiencing any change in your vision—blurriness, distorted or “wavy” vision, or you see floaters or dark spots—see your eye doctor right away.
If I develop diabetic macular edema, will I go blind?
Total vision loss can be prevented with early detection and treatment. That’s why regular eye exams are so important. Advances in treatments—including anti–vascular endothelial growth factor (Anti-VEGF) injections, steroid implants, and/or laser treatments—can halt or even reverse vision loss.