Whether you've just been diagnosed with diabetic macular edema (DME) or you're worried that you might have it after noticing changes in your vision, you're probably nervous. That's normal; after all, it's scary to think about a condition that might affect your eyesight. We're here to arm you with knowledge about what caused your vision changes, what to watch out for, what to expect at your eye doctor visit, and much more. The positive news: 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.
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 your central vision (as opposed to peripheral vision) and allows you 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 buildup 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 having a complete blind spot.
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 the center dot with each eye separately from a distance of about 14 inches (wear whatever corrective lenses you normally use). 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.
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, the cells of your body can't use the sugars (also called glucose) from the food you eat for energy. Instead, the sugar hangs around and accumulates in your bloodstream.
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. Diabetic retinopathy, or the presence of abnormal blood vessels in the eye due to high glucose levels, is the most common cause of macular edema. 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 you 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).
Nearly eight million Americans live with diabetic retinopathy, and 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. Healthy lifestyle habits can lower your risk of DME even further. And if you are diagnosed with DME, there are ways to prevent further vision loss or even save your eyesight entirely.
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 the condition:
When to Call the Doctor
Call your eye doctor right away if you notice any of the above symptoms, of course. But even if you don't, you should have at least one eye exam per year. If you've already been diagnosed with diabetic retinopathy, you may need to see the eye doctor more than annually, especially if:
Diabetic macular edema can be diagnosed through the same comprehensive eye examination that detects diabetic retinopathy. You can expect the exam to include:
If your doctor suspects macular edema, he or she may do further testing such as:
If you have diabetes, a preexisting eye condition, or have had an eye injury, you can't always prevent macular edema. If you are at risk for diabetes or have prediabetes, however, you can, by following the nutrition and lifestyle recommendations from your health care provider to avoid developing diabetes in the first place.
If you've been diagnosed with diabetes, maintaining good control of your blood sugar plus keeping up with regular eye exams can delay or halt vision loss -- or even avoid it altogether. Let's take a closer look at the habits that can help keep your eyes (and the rest of you) 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 eye doctor may request to see you more often depending on the presence and severity of any diabetes-related eye disease and whether or not you need treatment.
Stop Smoking (or Don't Start)
If you smoke, ask your doctor for help quitting. Smoking increases your risk of diabetic retinopathy, age-related macular degeneration, and blocked retinal blood vessels. The toxins in cigarette smoke damage the eyes' tiny vessels.
Get Moving
Physical activity guidelines from the ADA recommend that most adults with diabetes engage in 150 minutes or more of moderate-to-vigorous intensity activity weekly, spread over at least three days per week, with no more than two consecutive days without activity (Otherwise, the glucose-metabolizing effects of physical exercise will wear off.) If 150 minutes sounds like a lot, think of it instead as about 30 minutes five days a week. You can even spread it out into shorter bouts, like 10 minutes. The best part: Brisk walking counts, and you can do it anywhere -- no gym needed!
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.
Eat a Healthy Diet
Follow your doctor's specific nutritional recommendations but, in general, observe these principles:
Lower Your Blood Pressure If Needed
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. Exercising, eating a healthy diet, and not smoking will go a long way toward keeping blood pressure within a healthy range. If lifestyle changes aren't enough to bring your numbers down, talk to your doctor about possible medications to treat hypertension.
Let's get right to the point: You may have heard that treatment for macular edema often includes eye injections. That's true, but don't let it stop you from seeking help. Today's therapies for DME -- including anti-vascular endothelial growth factor (anti-VEGF) injections -- are incredibly effective at halting, and often even reversing, vision loss. What's more, with a little experience and the right preparation, you might find that getting through your injection appointments is easier than you expect. Treatments include Eylea (aflibercept) and Vabysmo (faricimab-svoa).
Other treatment options for DME include steroid implants and laser treatments. Interestingly, scientists have recently discovered that not all treatments work equally well for all people. For instance, although Black people have twice the incidence of DME compared with their white counterparts, a study published in the American Journal of Ophthalmology found that just 27% of Black people who received Avastin (bevacizumab) eye injections had improvements in their visual acuity, compared with 50% of white people. Researchers are still working to understand the reasons why.
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.
Another potential DME complication: Cataracts, which disproportionately affect people with diabetes. The good news, according to one study in the American Journal of Ophthalmology, is that people with DME who are being treated with eye injections can safely undergo cataract surgery. In the study, cataract surgery worsened the severity of DME in some patients, but didn't worsen their actual vision.
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, and you have options.
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, 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 is 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 toward living as fully as you can. Repeat to yourself as needed: "It's not my fault."
Life with diabetic macular edema is also busy. People with diabetes typically have a mini-army of doctors, of whom 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 or service for times when no one is available to drive you.
While you may be new to diabetes-related eye disease, there are many others who have walked this same path. These are some options for connecting with real people who understand what you're going through.
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