Some people are diagnosed with diabetes-related macular edema (DME) during their annual eye exam, before ever experiencing any symptoms. Others only find out about it when their vision starts to deteriorate. However it happens, a DME diagnosis is a sign that you need to take action — above and beyond what you’re already doing — to manage your condition and preserve your vision.
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We talked to ophthalmologist Nicole Bajic, MD, about the kinds of lifestyle changes that make it easier — physically, mentally and emotionally — to live with diabetes-related macular degeneration. Changing longstanding habits isn’t easy, but if you’re experiencing vision loss, it’s totally worth it. In fact, some lucky people are even able regain some of their sight as a result of their efforts.
Vision loss is scary and — unlike some other diabetes complications — relatively easy to recognize. But if you’re experiencing DME, the chances are good it’s not the only thing that’s going on.
If you’re diagnosed with vision loss caused by DME, Dr. Bajic recommends immediately following up with your primary care provider.
“It’s important to make sure the most serious concerns are addressed first,” she continues. “After all, your eyes don’t work if your heart’s not beating.”
Because diabetes can impact your body in so many different ways, it’s important that your health is monitored by a team of specialists.
Your primary care provider (PCP) is the team captain. Having a good relationship with them is key because they’ll make sure you’re getting your annual diabetes-related exams.
If you don’t have a PCP, you should get one as soon as possible.
“As an ophthalmologist, I often see patients who don’t have a primary care doctor. And they’re frequently kind of lost out at sea,” Dr. Bajic notes. If that’s your situation, let the ophthalmologist that diagnosed you with DME know. They may be able to recommend somebody.
In addition to PCPs and ophthalmologists, many people with diabetes see these specialists to prevent or treat complications:
If you’re experiencing DME vision loss, Dr. Bajic strongly recommends working with a low-vision specialist or vision rehabilitation specialist.
“Low vision specialists don’t just help people who are legally blind,” she explains. “If you have significant (and chronic) vision loss that’s hindering your ability to do daily activities, that may warrant an evaluation, just to learn about all of your options. Researchers are always coming out with new ways to help people with vision problems. And if you’re having trouble, by all means use the resources that are there.”
We know it can be easier said than done, but one of the single most effective ways to combat DME vision loss is to improve your blood sugar management. There are many different ways to do that, including:
Of course, no conversation about diabetes management would be complete without mentioning the importance of diet and exercise.
“It sounds cliche,” Dr. Bajic concedes, “but being active, moving your body more and clean eating can solve a multitude of ills.”
That’s probably not news to you. If it were easy, we’d all manage to eat a healthy diet and work out for at least 2.5 hours a week. They’re hard habits to get into for many of us — and can be harder still to maintain. But in the case of DME, there’s a very good incentive to try.
“If someone can really get their diet and exercise routine into a good place — and are able to manage their blood sugar and blood pressure effectively — they may be able to avoid getting started on the series of eye injections we use to treat DME,” Dr. Bajic says. “That can be highly motivating for some people. And understandably so!”
Here are some general guidelines to help you get started:
There isn’t a specific diet designed for people with DME. But there are some basic principles that are worth keeping in mind as you change your eating habits:
The closest you’re likely to get to a food plan for blood sugar management is the Mediterranean diet. If you need more individualized guidance, consider getting a referral to a nutritionist or dietitian. They’re trained to help people living with diabetes find the eating plan that works best for them.
A strong exercise program can do wonders for diabetes management. Not only can a good workout impact your blood glucose levels for a full 24 hours after the fact, but it’s also a great way to relieve stress and lower your blood pressure. In fact, the American Diabetes Association recommends that you miss no more than two days of aerobic exercise in a row.
Of course, exercise is only beneficial if it’s being done safely. Check with your PCP before beginning a new exercise routine. Once you have the all clear, remember to do the following:
If you’re experiencing vision loss as a result of DME — be it mild, moderate or severe — it’s important to adjust your environment accordingly. From installing grab bars to removing tripping hazards to purchasing assistive devices, there are lots of ways you can modify your home to fit your needs.
When a remedy sounds a bit too good to be true, it usually is. Managing DME vision loss requires making a lot of big changes. As a result, there are lots of quick fixes advertised to people with DME — especially on social media.
“You’ll see ads that say something like ‘For the low, low price of $59.99, you don’t have to do all of this work,’” Dr. Bajic shares. “Unfortunately, that’s not true. These products can be so tempting, but unfortunately, you actually do need to put in the work and the time to change your lifestyle.”
Dr. Bajic is unequivocal: When it comes to over-the-counter supplements, you need to follow your doctor’s advice. That’s because the research isn’t straightforward. For example, some people with age-related macular degeneration (AMD) benefit from taking a combo of certain vitamins and minerals, known as AREDS2 — but only some people. The effectiveness seems to depend on the type and stage of the condition.
The same goes for vitamins. Dr. Bajic notes that, while the literature is mixed, there’s compelling evidence to suggest people living with diabetic retinopathy have lower serum concentrations of several vitamins — particularly vitamin B, C and E. But before you start popping supplements, you should check with your primary care provider to see if you have a deficiency. It’s also important that they review your health history and the other medications you take to ensure adding vitamins is safe.
Herbal remedies are another story. Dr. Bajic recommends avoiding herbal supplements completely. The U.S. Food and Drug Administration (FDA) doesn’t regulate them, and they could potentially be harmful.
While there may be a place for a supplement in your DME regimen, Dr. Bajic recommends focusing your attention on eating healthy, moving more and taking your prescribed medications consistently and correctly. “There’s no substitute for a well-balanced, nutritious diet and exercise,” she says.
No two people with DME are the same, which means that no two people are going to react the exact same way to a diagnosis.
“It can vary widely based on a person’s situation, health status, background and personality,” Dr. Bajic clarifies. “I sometimes see people with objectively good vision who are very anxious about their condition. I also see people who are legally blind as a result of DME and aren’t bothered whatsoever. It’s important to meet a patient where they’re at, both physically and mentally, to ensure their needs are met.”
Losing your vision can be very scary — and so can getting eye injections. Denial is a common response. Sometimes, people stop going to their doctor appointments altogether.
“It’s really important for people with DME to address any mental health concerns they may have,” Dr. Bajic stresses. Getting into the right headspace makes it easier to understand your condition, get access to any resources you may need and build strong relationships with your healthcare team.
She adds that her patients have found vision support groups to be particularly helpful.
“They love it because they get to make friends with local people who are coping with similar challenges,” she explains. “The groups also get you connected to all the support services in your area. If your vision permits it, online support groups can be really helpful too.”
The experience of diabetes-related macular degeneration looks different for everyone. But one thing is true across the board: A DME diagnosis is a sign that something about your current lifestyle needs to change in order to prevent further diabetes complications and vision loss.
Changing habits and behaviors is hard, but you don’t have to do it alone. Reach out for help early and often, to healthcare providers, friends, family — and to the many, many people who are doing the same hard work you are. Together, you’ve got this.