Whether you’ve just been diagnosed or worry you could have diabetic retinopathy, you’re probably nervous, confused, and maybe even a little scared. That’s normal, and everyone featured on HealthCentral with a chronic illness felt just like you do now. But we—and they—are here for you. On this page alone, you’ll discover the realities and challenges of the condition, but also the best treatments, helpful lifestyle changes, where to find your diabetic retinopathy community, and all the crucial information to help you not merely manage—but thrive. We’re sure you’ve got a lot of questions...and we’re here to answer them.
Our Pro PanelDiabetic Retinopathy
We went to some of the nation's top experts in diabetic retinopathy 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 Retinopathy, Actually?
Diabetic retinopathy is a vision-impairing eye disease that many people with diabetes develop. Left untreated, it can cause blindness.
If you are already 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, causing high blood sugar levels. Over time, high sugar levels damage blood vessels. In your eye, these damaged blood vessels can leak fluid, blood, or lipid deposits into the retina, which is the light-sensitive tissue that lines the back of the eye.
A quick primer on eye anatomy might be in order right about now:
Light enters your eye through your cornea, pupil, and lens, which are all at the front of your eye.
That light then focuses on the nerve-packed retina.
The retinal cells send messages through the optic nerve which, in turn, delivers them to the visual cortex of the brain.
In the center of the retina is a small, specialized area called the macula which helps us see fine detail.
When the retina is compromised due to leaking vessels, it swells and the cells are unable to send accurate messages to the brain. When vessels in the macula leak and it becomes swollen, it’s called macular edema. About half of people with diabetic retinopathy will develop diabetic macular edema, which can cause blurred vision.
Currently, about 28%—almost one in three—of U.S. adults with diabetes aged 40 years and older have diabetic retinopathy. The prevalence of the condition is even higher for African Americans and Mexican Americans, making it one of the leading causes of new cases of legal blindness in the country. But you can help prevent diabetic retinopathy—or treat it before it takes your vision! By understanding what causes it, managing your diabetes, and getting regular eye exams, you can save your eyesight.
What Are the Stages of Diabetic Retinopathy?
There are two stages of diabetic retinopathy:
Non-Proliferative Diabetic Retinopathy (NPDR)
Non-Proliferative Diabetic Retinopathy is a term for the beginning stages of retinopathy including mild to severe stages. You may have slightly blurred vision, distorted ("wavy") vision, or you may have no symptoms at all, which is why it is so important to see your eye doctor—who can check for any irregularities in your retinal blood vessels—regularly. The vessels may begin to show signs of deterioration before you notice any change in your eyesight.
Another possibility during NPDR: The damaged retinal vessels can close entirely, preventing blood from nourishing the area. When this happens, it is called macular ischemia and it can cause reduced vision or even blindness.
Proliferative Diabetic Retinopathy (PDR)
Proliferative Diabetic Retinopathy is a more advanced stage of the eye disease. Once enough of the retinal blood vessels become damaged, your body retaliates with a clever solution: Grow new blood vessels! Sounds like a great idea, right?
Unfortunately, these new vessels grow in places where they shouldn't, and they do not supply blood to the retinal tissues. Instead, they are very weak and often bleed into the vitreous, which is the clear, jelly-like substance in the middle of the eye.
The leaked blood can partially or entirely block your vision. In addition, these brand-new vessels cause scar tissue as they grow, which can lead to further damage of the macula and cause a retinal detachment.
What Causes Diabetic Retinopathy in the First Place?
Diabetic retinopathy is a direct result of diabetes in all its forms: Type 1, Type 2, and gestational diabetes, as well as the much less common monogenic diabetes (caused by a mutation in a single gene). Other health conditions can cause diabetes as a secondary disease (and thus cause diabetic retinopathy), including:
Cystic fibrosis: The body creates thick mucus that scars the pancreas, where insulin is produced.
Hemochromatosis: The body stores too much iron, which can build up in the pancreas and affect its ability to produce insulin.
Cushing’s syndrome: The body over-produces the "stress hormone," cortisol, which can lead to insulin resistance.
Acromegaly: The body over-produces growth hormone, which can lead to insulin resistance.
Hyperthyroidism: The body over-produces the thyroid hormone cortisol, which can lead to insulin resistance.
If you have any of the above conditions, talk to your health care provider about your risk of developing diabetes (though we're sure you're both already on it!). Extra glucose in your bloodstream damages vessels over time, so the longer you have uncontrolled diabetes, the more likely your chance of developing diabetic retinopathy.
Do I Have the Symptoms of Diabetic Retinopathy?
The tricky thing about diabetic retinopathy is that you may not experience any symptoms until your retinal blood vessels are already compromised. That's why it is so important to have regular checkups with your eye doctor—an ophthalmologist or an optometrist—if you have diabetes. (We're going to remind you of this a few more times before we're done!)
As diabetic retinopathy progresses, though, you may experience some of the following symptoms in one or both eyes (it's usually both):
Distorted vision (straight lines may appear wavy and objects may look bent or misshapen)
Seeing floaters or strings of floaters in your vision
Blind or dark areas in your field of vision caused by leaked fluid
When to Call Your 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.
If you have diabetes and become pregnant, you'll need to see your eye doctor once each trimester, or maybe even more, if you have already developed diabetic retinopathy.
And if you're newly diagnosed with diabetes, ask your health care practitioner to recommend a trusted eye doctor who is familiar with the effects that diabetes can have on vision.
How Do Doctors Diagnose Diabetic Retinopathy?
Diabetic retinopathy can be diagnosed through a comprehensive eye examination. Testing, with emphasis on evaluating the retina and macula, may include:
Visual acuity measurements to evaluate your central vision.
Refraction to determine if a new eyeglass prescription is needed (this is the whole “Which is clearer: 1 or 2?” phase of the appointment). With uncontrolled diabetes and diabetic retinopathy, your prescription may change more frequently.
Dilation to evaluate the structure of your entire eyeball, including the retina. 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 diabetic retinopathy, 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 Retinopathy?
If you have diabetes, you can't always prevent diabetic retinopathy. (If you are at risk for diabetes or 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, you can delay or halt vision loss—or, yes, avoid it altogether! What works best: the healthy lifestyle habits that can help keep your eyes—and your entire body—in their best shape.
1. 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%.
2. Stop smoking or don't start.
Ask your doctor for help quitting. Smoking damages blood vessels, compounding the damage down by the blood sugar.
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 week. 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 "nonexercise activity thermogenesis," or the number of calories you burn in daily living, which can have a huge impact in preventing weight gain.
4. Eat healthy.
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.
5. 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.
What Is the Best Treatment for Diabetic Retinopathy?
If your eye doctor determines that you have NPDR (early diabetic retinopathy), she or he may just recommend more frequent exams to keep, well, an eye on the situation, as well as vigilant blood sugar monitoring and control.
If you develop macular edema or have PDR (advanced diabetic retinopathy), your doctor will most likely recommend immediate treatment. Today's available treatments can improve or forestall—and in some cases even reverse—vision loss for many years but keep in mind that diabetic retinopathy is a chronic condition. Options include:
Injecting medicine into the eye does not sound fun, but if you've been diagnosed with macular edema, it's your first line of defense. And don't worry, the surface of your eye will be numbed! The medications used, called vascular endothelial growth factor inhibitors (called anti-VEGF agents), can help stop the growth of new blood vessels and decrease leakage in the retina. Options for different medications include:
Eylea and Zaltrap (aflibercept)
Intraocular steroids can also be used to help treat macular swelling.
What will happen: Your eye doctor will use a topical anesthetic to numb your eye and will then inject the medicine through the white of your eye into the vitreous. Multiple injections may be required over a period of months.
Focal Photocoagulation (or Focal Laser Treatment)
If you've been diagnosed with macular edema (a swollen macula), this quick, painless, out-patient procedure can be performed alone or in combination with anti-VEGF injections.
What will happen: A laser is used to repair leaks in specific damaged retinal blood vessels near the macula. Results are permanent, but do not prevent other vessels from leaking in the future.
If damaged blood vessels are found throughout the entirety of your retina—or if new, weaker blood vessels have grown—this quick and painless out-patient treatment may be suggested.
What will happen: Multiple "scattered" laser burns will be made on the retina in an attempt to shrink the new and/or damaged vessels and prevent new ones from developing. Some loss of peripheral vision or night vision after the procedure is possible.
If injections and/or laser treatments do not help, your eye doctor may recommend this surgical procedure.
What will happen: Under local or general anesthesia in a hospital or surgery center, a tiny and usually self-healing incision will be made into the white part of your eye. If present, blood in the vitreous and scar tissue on the retina will be removed to help with visual acuity and to treat a retinal detachment. Afterwards, saline, a gas bubble, or silicone oil may be injected into the vitreous cavity to help hold the retina in position.
Can Diabetic Retinopathy Have Serious Complications?
Unfortunately, it can—and these complications may impact your vision. (Have we mentioned getting regular exams with your eye doctor yet?) If you experience any of the above symptoms, call your eye doctor right away. She or he can check for:
Vitreous hemorrhage: This is when those new, weak blood vessels bleed into your vitreous, the jelly-like substance that fills the center of your eye. You may see dark spots or floaters in your field of vision, or—if the bleeding is heavy—your vision might be blocked entirely. The blood may clear on its own within a few weeks or months, but surgery may be necessary if not.
Glaucoma: The newly formed blood vessels may cause pressure to build up in the eye and damage your optic nerve.
Retinal detachment: Blame this one on those pesky new blood vessels, too. As they grow, they also stimulate the growth of scar tissue which can pull your retina away from the back of your eye. This serious condition can cause a sudden onset of floaters or severe vision loss and usually requires emergency surgery to repair.
Macular edema: The macula is like the bullseye of the retina--it's right in the center and it is the most light-sensitive part of it, responsible for our ability to see fine detail, color, and faraway objects. When general swelling in the retina makes its way to the macula, vision can be severely impaired, sometimes permanently.
What’s Life Like for People With Diabetic Retinopathy?
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 retinopathy in all its forms. And there are so many people in the U.S. (almost 8 million, in fact!) going through the same thing who can help you through it.
If you do experience vision impairment or loss, adjusting to a new way of life can be difficult. Look for adjustment classes at vision loss clinics 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.
Another source of stress when it comes to diabetic retinopathy is self-blame. While there are ways to reduce your chances of diabetic retinopathy, the disease 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 retinopathy 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.
Where Can I Find Diabetic Retinopathy Communities?
TuDiabetes: Search the forums on this community site for a wealth of personal stories and support on coping with diabetic retinopathy and other diabetes-related issues.
Diabetes Daily: The community forums here are always lively and helpful.
A Sweet Life: Start here for incredible recipes and upbeat tips for eating and living healthy with diabetes.
D-Mom Blog: Encouragement and tips from a mom of a diabetic child whose philosophy is "kids first, diabetes second."
VisionAware: An excellent resource, from the American Printing Foundation for the Blind, for learning to adjust to (and thrive with!) vision loss.
The American Academy of Ophthalmology: The AAO compiles all the latest research and news on macular edema and other eye conditions and diseases. Their patient-focused EyeSmart site is a great place to start for basic information, helpful tips, and reassurance.
The 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.
Approximately 40% of all people with diabetes have at least mild diabetic retinopathy. In general, the longer one has had diabetes, the greater are one's chances of developing diabetic retinopathy. High blood pressure and high cholesterol in the blood are additional risk factors to keep in mind.
Can you prevent diabetic retinopathy?
The short answer is, yes! But, it’s going to take a lifetime of consistency. One of the best ways to prevent eye problems is to get your eyes screened regularly. For diabetics is also super important to keep insulin levels at a healthy level. This combination of regular eye appointments and insulin monitoring is the foundation for preventing diabetic retinopathy.
What are the symptoms of diabetic retinopathy?
According to the Mayo Clinic, diabetic retinopathy symptoms can affect both eyes and include:
vision that is blurred or fluctuating
impaired color recognition
dark or empty spaces in the vision
spots or dark strings floating in your vision (also known as floaters)
But don’t freak if you are experiencing any of these symptoms. Just visit your eye doctor who will be able to confirm a diagnosis.
Can diabetic retinopathy go away?
While there's no known cure for diabetic retinopathy, retinal specialists can preserve and often restore vision loss from diabetic retinopathy through a variety of methods. These include injecting medication into the back of the eye, performing laser procedures and/or retinal surgery.