Complications: preventing them is the motivation behind almost everything we do in managing our diabetes. Yet how much do we really know about how to live with them? After all, life doesn't stop with a diabetes complication.
I've been thinking that even if you're diligent with your diabetes management, that isn't necessarily a guarantee (nor is it easy!). You could have amazing BG control, but still develop some damage. Totally unfair, right? This is the catalyst behind a new monthly series here at the 'Mine, taking a closer look at complications one by one, to help all of us be well-educated and prepared to deal with what may come. Because you just never know...
btw, did you know that January is National Eye Care Month? So we're kicking off this series with diabetic eye disease. We discovered a great source to turn to in Dr. Paul Chous, an optometrist in the Seattle, WA, area who was diagnosed with type 1 diabetes at age 5. He himself dealt with diabetic retinopathy as a PoliSci grad student in the mid-80s, before making a career change to become an optometrist. He has written a book called Diabetic Eye Disease: Lessons from a Diabetic Eye Doctor and has contributed numerous articles to dLife. He also speaks at conferences around the country to eye doctors on life with diabetes, so if your doctor sounds especially well-versed in diabetes management, you can probably thank this guy.
Let's get started...
What exactly is diabetic eye disease?
Most people are familiar with the "Big Bad" of diabetic eye disease: diabetic retinopathy. It's the most well-known complication associated with the eyes, but there are actually seven different conditions that can affect a PWD's eyes: Cataracts; Glaucoma; Dry Eye Disease; Cranial Nerve Palsy; Ischemic Optic Neuropathy; Retinal Vascular Occlusion and Retinopathy. Whew. Retinopathy actually has several stages of severity, ranging from "microscopic areas of blood vessel damage" to "small areas of bleeding and fluid leakage" to "abnormal blood vessel growth causing lots of bleeding and formation of scar tissue resulting in permanent vision loss." Whoa.
Diabetic retinopathy is indeed the most common eye complication, causing nearly 24,000 cases of blindness in PWDs each year. It's also in the same family of complications as kidney disease and neuropathy, because it's a microvascular complication, meaning that it's caused by damage to your small blood vessels.
Warning signs and getting checked
What's tricky is that most eye diseases appear with minimal symptoms, so the majority of the time, you won't even be aware that you have any problems with your eyes. In other words, even someone with perfect 20/20 vision and no pain or vision loss could find themselves facing diabetic retinopathy. Patients may have early symptoms with cataracts (blurred vision), dry eye disease (watery or burning eyes, though sometimes dulled from neuropathy in the eye), and cranial nerve palsy (sudden double vision). Most of the time, eye disease isn't noticeable until bleeding spots appear or vision loss is severe, which means the complication has already progressed. Ugh.
This is why it is crucial, experts say, to get a year dilated eye exam from an ophthalmologist, a medical eye doctor (optometrists — who generally deal with routine exams and corrective lenses — are also qualified). Only a qualified doctor will be able to look deep inside your eye and into your retina to see if there is any damage. Diabetic retinopathy is a progressive disease, so even the smallest sign needs to be taken seriously. We all know how annoying the eye drops and sensitivity to light are, but that's temporary discomfort that could prevent a lifetime of vision problems. So get the darn exam, will ya?!
How to get a proper diagnosis
While either an ophthalmologist or optometrist can handle your yearly eye exam and give you the info you need, only the ophthalmologist can provide surgical treatment, including laser surgery for cataracts, glaucoma, or retinopathy. Patients with severe diabetic retinopathy may also need to see a retina specialist.
But how do you know if your eye doctor is up to snuff? There's no "certification" in handling patients with diabetes, so like most specialists, you need to do some interviewing. In his book, Dr. Chous outlines a few key questions you can ask, including:
* Do you have a lot of experience with diabetes and its various effects on the eyes? Do you have any special interest in diabetic eye disease?
* Do I have any signs of diabetic eye disease? Do I have any cataract, glaucoma, corneal problems, retina problems or eye muscle
problems that are being caused by diabetes?
* If I do have diabetic eye disease, how do you recommend we manage or treat it? When do you want to check my condition again?
Are you experienced with the surgical or laser treatment of diabetic eye disease? If my condition worsens, will you refer me to a sub-
Dr. Chous also recommends asking if your doctor photographs your retina. Why are pictures so important? The only way to tell the progression of the eye is to keep a record of how it looks. Most eye doctors have to rely on memory, written descriptions, or drawings. Do you want your vision in the hands of your doctor's artistic ability? Look for someone using more advanced visual equipment.
What do you do if you are diagnosed with diabetic retinopathy?
Diabetic retinopathy is sadly not reversible, but it is highly treatable, in terms of halting the progression. For one thing, if it isn't affecting your vision now, chances are it never will. Dr. Chous says that one of the biggest fears patients have about diabetes is going blind, but adds that our actual lifetime risk of going blind from diabetes is only about 19%. With today's tools and technologies to treat diabetic eye disease, it's even less.
Early detection is the big key here. The sooner you find it, the sooner you can slow or stop the damage from progressing — through tightening BG control, regular follow-ups, and in advanced cases, called proliferative diabetic retinopathy, using laser treatments or surgery to treat and restore vision.
Dr. Chous also recommends adding lots of fiber to your diet and cutting saturated fat, and says to keep exercising unless the retinopathy is severe, so make sure to check with your doctor before you start or stop your routine.
Managing diabetes with vision loss
In the case of vision loss (not always complete blindness), here are a few new tools being developed to help PWDs:
* Prodigy Voice is an audible glucose meter designed with help from the National Blind Associations as well as CDEs. It's programmed to speak to the user, verbally sharing their BG value as well as blood sugar averages. The meter features tactile buttons and a noticeably different test strip for easier use. Prodigy also has an audible insulin pump in the works.
* Insulin pens can also be useful for people with vision loss, as most insulin pens will "click" when drawing up a dosage. Insulin pens are available for both long-acting and short-acting insulin.
* Syringe magnifiers, that provide about 2X magnification to make those tiny needle markings easier to see.
* Count-A-Dose, which helps you measure out insulin with a click-wheel that audibly indicates each unit.
* Syringe Support, which also helps you measure out insulin, mix insulins, and hold a syringe in place for injections.
... to name a few. Dr. Chous actually recommends that PWDs who don't have any vision problems investigate and learn more about these tools, just in case. It's better to learn about a product when you can still see it properly, no?
Where can I get help for living with vision loss?
The National Federation for the Blind is the go-to resource here. Their site includes a full section on helpful tools and products for those with impaired vision.
Most states also have a Commission for the Blind, which offers assistance and resources for people who are legally blind. To find yours, just google "Commission for the Blind" and your state's name.
It's not the end.
Being diagnosed with a complication — or even wondering if you might have it — is scary as hell, no doubt. The big message to remember is that "life goes on..." as I know it has for many of you out there. There are tools to cope and resources available to help you keep going. If you have diabetic retinopathy or another diabetic eye disease, we'd love to hear your experiences in the comments and make this a real go-to resource for anyone facing eye complications.