What Is Diabetic Macular Edema (DME)?
That's a scary possibility, but knowing what to look out for and getting the right treatment can help protect your sight.
Even if you don't notice problems, when you have diabetes it's important you get your eyes checked every year. If you do have a problem, see an eye doctor right away. Your eye doctor may refer you to an ophthalmologist who specializes in the retina and can provide treatment. If you catch it early, there's a chance you can stop long-term damage.
Causes of DME
High blood sugar weakens the blood vessels in your eyes. That can make them leak or grow out of control in your retina, the light-sensitive area at the back of your eye. This is called diabetic retinopathy.
When fluid seeps into your retina, it can cause diabetic macular edema. The leaking makes your retina swell, which hampers the work of your macula, the special, sensitive part that gives you sharp vision.
Symptoms of DME
DME doesn’t always cause symptoms.
But you may:
- Have images directly in front of you appear blurry or wavy
- See colors that seem “washed out”
If this happens to you, see your doctor right away.
Getting a DME Diagnosis
Before any testing, your doctor may ask you questions such as:
- Have you noticed changes in your vision? If so, what kind?
- Have you been diagnosed with diabetes? If so, when?
- Does anyone in your family have it?
- How have your blood sugar and A1c levels been lately?
- Do you have high blood pressure or high cholesterol?
- Do you have any other medical conditions?
You will need a thorough eye exam, which usually includes:
- A visual acuity test. It checks how well you see at different distances.
- A dilated eye exam. Your doctor will use drops to widen your pupils and look at the inside of your eyes. They'll look for signs of disease, including damaged or leaking blood vessels, swelling, and fatty deposits on the retina.
If your doctor thinks you have DME, you may also need one or both of these tests:
- A fluorescein angiogram (FA) takes pictures of your retina using a special dye that helps find any leaking blood vessels. The dye is injected into your arm but travels quickly to your eye.
- Optical coherence tomography (OCT) uses a special camera to photograph your retina. It is very sensitive and can find even small amounts of fluid and swelling.
Questions for Your Doctor
You may want to ask your doctor some questions to learn more about DME. These might include:
- What is causing my symptoms?
- Will I lose my sight?
- Am I at risk for other eye diseases?
- Do you have experience treating DME?
- What type of treatment do you recommend for me?
- What can I expect from it?
- What else can I do to protect my vision?
- How often will I need to have my eyes checked?
Treatment for DME
To treat DME, your doctor may use drugs that are injected into your eyes to help stabilize the new blood vessels and stop leaking. They also slow the growth of new blood vessels. The drugs they will use are Anti-VEGF medications.
VEGF and Ang-2 are proteins that can lead to vision loss in people with DME. They cause the growth of abnormal and fragile blood vessels. Most treatments target and block only VEGF.
The main drugs include:
Angiopoietin-2 is another protein involved in blood vessel formation. Ang-2 inhibitors help stabilize these fragile new blood vessels so they don't leak.
VEGF/Ang-2 inhibitors include:
In severe cases, you may also have laser photocoagulation. A doctor will use a tiny laser on your eye to seal leaking blood vessels. You may need more than one treatment to control the problem. It's usually not painful, but you may have a slight stinging feeling when the laser touches you.
Sometimes, steroid shots may help.
Another treatment is a surgery called vitrectomy. This is usually done because of bleeding (not macular edema). Your doctor takes out the fluid clouding your vision and replaces it with a clear solution.
Taking Care of Yourself
There’s a lot you can do to help prevent your condition from getting worse.
First, manage your diabetes by controlling your blood sugar, blood pressure, and cholesterol. Diet changes, keeping a healthy weight, and getting exercise can help you manage these problems. Talk with your doctor about the best plan for you.
Also, don’t sidestep regular eye exams. Symptoms can sneak up. Your doctor needs to see you to keep track of how your treatment is working.
Have you lost some vision? Talk to your doctor about visual aids, like magnifying glasses, if eyeglasses alone aren't enough. Ask them about resources in your area that can help you learn skills for living with vision loss.
Caring for Your Emotional and Mental Health
DME can affect more than your eyes. Some people who have it also have heightened anxiety, depression, or other forms of distress that impact well-being. Unmanaged emotional or mental health issues can make it harder to seek care or stick with treatment.
To care for your overall well-being with DME, you can:
Take time to grieve. Vision problems can be frustrating, and you may feel sad when your sight changes. It’s OK to take some time to mourn that loss. Tell your doctor if your feelings are too much to handle on your own.
Talk to a mental health professional. Ask your doctor to refer you to a therapist who works with people who have diabetes or other conditions that impact vision. They can teach you skills to address any emotional issues or behavioral barriers that stand in the way of your care.
Partner with your doctor. You may feel more hopeful about your future if you find an effective treatment for DME and learn to manage your diabetes with medication or lifestyle changes.
Join a support group. You can learn more about DME by talking to people who live with it. Ask your medical team if there’s one-on-one or group peer support in your area. You may also find folks to connect with through groups such as the American Diabetes Association, American Foundation for the Blind, Prevent Blindness, or MD Support.
What to Expect with DME
Treatment can help protect your vision. It can greatly decrease your chance of losing your vision.
Stay on top of your diabetes, and stick with your treatment plan. You'll have the best chance of maintaining your sight and staying independent.
How Your DME Might Change Over Time
Long-term high blood sugar damages protective cells inside your blood vessels and weakens your vessel walls. When this happens in your eye, fluid can leak into your retina, causing swelling in your macula. Fragile new blood vessels may grow to replace the old ones. Over time, this process can result in a spectrum of vision changes.
DME often causes general blurriness. You might find it’s like looking through the wrong prescription glasses. This fuzziness can make it hard to read, watch TV, drive safely, or clearly make out details around you. If you get a lot of swelling around your macula, your vision could get so out of focus that you go legally blind.
It’s hard to predict how fast your vision loss might set in, or how serious it’ll be. But the good news is that treatment for DME works well for most people. And you’re less likely to have permanent vision changes when you work with your doctor to manage your diabetes and DME fast and early.
But how your DME changes over time depends on several things, including:
How well you control your blood sugar. DME usually happens when you go years with untreated high blood sugar. But there’s a good chance you can lessen swelling and prevent further vision loss if you work with your doctor to get your diabetes under control.
Your response to treatment. The goal is to slow or stop blood vessels from growing and leaking into your eye. The main way to do that is with a shot of medicine that goes directly into your eye, but there’s more than one treatment for DME. Your sight may return to normal if you act early, but sometimes it’s not possible to restore all vision loss.
How long you’ve had DME. The severity of vision loss from DME often depends on how much fluid you have in your eye and how long it’s been there. The window of time where you can save your sight usually gets shorter the longer your condition goes untreated.
Your race or ethnicity. People who are Black or Hispanic/Latinx are more likely to have serious vision loss from DME and less likely to get treatment for it, compared to some other racial and ethnic groups.
Your genes may play a role, but health-related disparities often stem from social and economic inequalities that are more likely to affect communities of color. These so-called social determinants of health can make it harder to manage diabetes or related conditions.
Tips for Living With DME
With good blood sugar control and medical treatment for DME, you may be able to get most or all of your vision back. But no matter what happens with your eyes, there are steps you can take to live well with diabetic macular edema.
Try these tips:
Look into low vision rehabilitation. A low vision specialist can go over behavioral changes or low vision aids that’ll help you adapt to all kinds of vision loss. Your doctor can refer you to one of these specialists even if you don’t have a lot of sight problems right now. You may feel less anxious about your future if you plan ahead.
Treat other health problems. Along with high blood sugar, medical conditions like high blood pressure and high cholesterol can further damage the blood vessels in your eyes. This kind of cellular stress can worsen vision problems already caused by DME.
You may need to work with a mix of health professionals to treat your diabetes and guard against vision loss, including:
- Primary care doctor
- Diabetes specialist
- Retina specialist
See your eye doctor regularly. If you have diabetes, you should already get an annual checkup with an ophthalmologist (a doctor who specializes in eye diseases). You may need to go more often if you need eye shots for DME, at least for the first 1-3 years of treatment.
Tap into all your resources. Active and aggressive blood sugar control, along with targeted therapies for DME, can help you see better for longer. So it’s important that you tell someone on your medical team if you have barriers to routine medical care or diabetes-related treatment.
Your doctor, social worker, or nurse navigator may connect you with local or national groups that can help:
- Pay for medication or other treatments
- Get you rides to and from doctor visits
- Go over nutrition counseling to manage blood sugar
- Screen for other health problems
- Keep up with follow-up appointments
Find more information about assistance programs or other resources for people with diabetes or related eye diseases through the the American Diabetes Association and the American Academy of Ophthalmology.
Consider disability insurance. You may never have any serious vision problems, but you might want to think about long-term disability insurance, just in case. Talk to your doctor about the chances that future vision loss could affect your ability to work.
Ask about all your treatment options. Your doctor can help you manage your diabetes and DME with a treatment plan that fits your lifestyle. This might include other medications besides an eye shot, lifestyle changes, or clinical trials that are in your area.
Get Support for DME
For more information about the eye conditions related to diabetes, go to the web site of the American Diabetes Association. They have links that can help you get the support you need.