Everything You Need to Make Life With DME Easier
“Diabetic macular edema, or DME, can be a frightening diagnosis because many people have never even heard of it before,” says Christina Y. Weng, M.D., associate professor of ophthalmology at Baylor College of Medicine in Houston, TX. “But what I have found from my experience is that knowledge allays fear.” At your regular eye exam (if you have diabetes, you're getting these at least once a year, right?), it can be scary when your eye doctor mentions DME for the first time. Never heard of it? You're not alone. Start here to set yourself up for success in managing your DME.
Learn the Basics of Your Condition
If you've been diagnosed with DME, resist the urge to Google without direction. There is so much information online and not all of it will be relevant to your situation, says Michelle Liang, M.D., an assistant professor of ophthalmology at Tufts Medical Center in Boston. “It's good for patients to do their research, but there's a lot of stuff online that's not vetted,” she says. Instead, Dr. Liang directs her patients to the American Academy of Ophthalmology's patient portal for accurate and up-to-date info on the causes, symptoms, diagnosis, and treatment of DME.
Go Deeper With Podcasts and Videos
Dr. Liang also likes the podcast series called Retina Health for Life—remember, the macula is part of the retina, or the photo-sensitive tissue that lines the back of your eye—from the American Society of Retina Specialists (ASRS). Listen to the president of the ASRS chat with retina experts and patients about everything from clinical trials to retinal imaging to the truth behind eye injections (no, they really shouldn't hurt!). If you prefer to put faces to the voices, you can watch the video versions of the podcast on the ASRS YouTube channel.
Print Out This Funky Grid
If you notice changes in your eyesight, test your vision at home with an Amsler Grid, which is 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. 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 next eye exam which should be scheduled as soon as possible if changes in your vision occur.
Invest in a Few Vision Tools
Not everyone with DME will experience compromised vision, and if caught early, it can be prevented. If you struggle from vision loss due to diabetes, make an appointment with a low-vision specialist (your eye doctor can make a referral). He or she might suggest some helpful low-vision aids, like high-power reading glasses, telescopic glasses, light-filtering lenses, magnifying glasses, closed-circuit television, and more. In addition to physical tools, there are many apps that help make daily living with low vision easier. The American Foundation for the Blind upkeeps a starter list of handy apps; think digital magnifiers, sign readers, and text-to-speech translators.
Keep Reading, Bookworms!
Reading your favorite novels, biographies, and bestsellers can become frustrating if you have vision changes due to DME. That's why bookworms with low vision love e-reading apps designed with them in mind that can narrate and/or enlarge and isolate text. One that the ASRS recommends is Spotlight Text, developed in conjunction with the American Foundation for the Blind and the Lighthouse Guild for the Blind. Audiobooks are a great option, too. You don't have to quit your reading habit!
Consider a Continuous Glucose Monitoring Device
The most important factor in managing DME and preserving vision is keeping your blood sugar level under control. To that end, Dr. Weng recommends talking to your primary-care provider or endocrinologist about a prescription for a continuous glucose monitor (GMC). These sensors—attached to the skin of your upper arm or abdomen with a small cannula and held in place with an adhesive patch—track your blood glucose 24 hours a day and can be worn for days or weeks at a time.
Breathe Deeply and Say “Om”
Can meditation help with your vision? Raj Maturi, M.D., a clinical spokesperson for the American Academy of Ophthalmology and a retina specialist at Midwest Eye Institute in Indiana, thinks so! “Getting your stress level under control is critical to managing your blood sugar level,” he says. After all, high blood pressure is a risk factor for blocked retinal arteries, which can lead to or worsen macular edema. Dr. Maturi recommends his patients start a daily practice with apps like Calm and Headspace.
Get a Good Calendar
People with diabetes typically have a mini-army of doctors, of which your ophthalmologist is just one. Managing so many appointments and treatment protocols can be time-consuming. “One of my patients was telling me that he had nine different visits to his specialists in just one month!” says Dr. Weng. Working out a good calendar and reminder system—whether it's electronic or a paper planner—can go a long way in helping you feel positive and in control, she says.
Secure Your Rides
Patients with DME vision issues can have difficulty driving after dark, says Dr. Liang. Avoid risky situations by downloading a ridesharing app like Uber or Lyft so that you're never tempted to hit the road in suboptimal light. (Hitching a ride with a friend is great, but they might be unavailable.) Having an app ready to go with your payment information on your smart phone makes staying safe a no-brainer. Another option: Rides in Sight, a 24-hour service that helps the vision-impaired find all the transportation options in their area.
Find Your Peeps
No matter how many online resources you have, articles you read, apps you download, or doctors you trust, there's nothing like connecting with people who understand what living with DME is really like. Thankfully, they're easy to find on social media. Try joining the private Facebook group Diabetic Retinopathy (DR) & Diabetic Macular Edema (DME) Xplained to ask questions of the more than 5,000 members—or just to vent!
- DME Basics: American Academy of Ophthalmology. (2020). “What Is Macular Edema?” aao.org/eye-health/diseases/what-is-macular-edema
- Low-vision Aids: American Foundation for the Blind. (n.d.). “Low Vision Optical Devices.” afb.org/node/16207/low-vision-optical-devices
- Low-vision Apps: American Foundation for the Blind. (n.d.). “Accessible Mobile Apps.” afb.org/blindness-and-low-vision/using-technology/assistive-technology-products/mobile-apps