“You’ve got some small bleeds near the macula. Get your blood sugars under control and we will see you in six months.”
Some version of this will be said to someone with diabetes in an ophthalmologist’s or retinal specialist’s office today. And tomorrow. And the next day.
Diabetic eye disease can come on quickly or slowly, oftentimes with no symptoms to your vision. Every year, hopefully, people with diabetes have access and take advantage of the opportunity to have a detailed eye exam.
But if, as with myself, your doctor has begun to see symptoms of early retinopathy in those baby blues, you may also leave that exam in frustration at a treatment model that asks you to wait until the problem progresses enough to warrant treatment, to wait six months or more knowing damage is there, but leaving with no actionable treatment plan.
I don’t like waiting.
And, thankfully, neither does Dr. Ben Szirth, Director of Telemedicine at Rutgers University Institute of Ophthalmology in Newark, New Jersey. Each summer, Dr. Ben and his team of ophthalmology and optometry students fly to the Children with Diabetes Friends for Life Conference in Orlando, Florida to screen hundreds of children and adults with type 1 diabetes.
Dr. Ben believes in using the latest advancements in eye science – namely OCT (ocular coherence tomography) and FAF (fundus autofluorescence) – to screen people with diabetes much earlier, less invasively, and more effectively. He wants children to benefit from having an established baseline (long before the standard of an exam 5-8 years post-diagnosis) and he advocates for the parents to go back to their doctors at home and demand that those doctors adopt similar high-tech screening technologies.
Dr. Ben has championed these technologies for the last two years in Washington DC as well as to his colleagues in the field, traveling to conferences and speaking with eye professionals about the benefits of these machines. “I’ve had battles with the majority of them or over a decade because, when the standards for retinopathy were put down, it was before a lot of the new tech we have today than when they came out – than just five years ago. I’m shocked and angry at how many lectures I have to give on autofluorescence and doctors don’t know how to interpret it.”
Fundus autofluorescence is a technology that was developed to assess age-related macular degeneration in populations over the age of 50-55. Any protein leaks in small vessels will show up under autofluorescence as the retinas are illuminated from the back by a very bright light, illuminating a substance called lipofuscin, a mixture of autofluorescent pigments that accumulate in the RPE (retinal pigment epithelium). Very subtle metabolic changes appear and let the doctor and his team see problem areas before they are problems.
Dr. Ben is equally frustrated that adults with diabetes are not screened before a problem progresses and that they’re sent away when there are early signs of retinal issues with more questions and anxiety than answers.
“More anxiety,” he says. “You don’t need more. We need to set a protocol that will help the patient and not create fear in the patient. If you understand, you can cope. It’s when you don’t know what’s happening, that’s when you’re creating more fear. What I abhor the most in all eye doctors is when I hear “Well, why don’t you come back in six months and we’ll see where you’re at.” The translation is “I have no clue what I’m seeing here,” he says.
One of the first lines of defense in helping people with diabetes identify eye problems before they start that our eye professionals could and should be doing is monitoring a patient’s blood pressure more closely, says Dr. Ben, with a target of “125/80 in women and a little bit higher for men.”
He reminds us that the eyeball is not detached from the rest of our bodies; it’s part of our circulatory system. “Any time you have a blood pressure that’s high, the blood vessels that are in distress are going to break and leak. If your blood pressure is in check and you’re doing the best that you can, the leaks are going to be reabsorbed by your body in six weeks. Think of the blood vessels as very sensitive to pressure, especially after fifteen plus years of diabetes,” he explains. “Even if you did everything you were supposed to do, there will be some thinning. The more cardiovascular work you do, the stronger those muscles will be.”
Too many of our eye exams don’t include dilation and blood pressure checks and advanced technology like OCT and FAF. When I asked my own retinal specialist to he chooses not to check blood pressure at my appointments, he explained that he considered blood pressure checks to be the jurisdiction of a patient’s general practitioner, but in the next breath told me that he is the only caregiver that a number of his patients with diabetes see for their diabetes.
My retinal specialist and my ophthalmologist both do take advantage of OCT technology, however, which is similar to an MRI of the eye. Examining ten various dissected layers of the retina, OCT imagery allows an eye professional to see if there is edema (fluid buildup) or inflammation that is indicative of a patient going toward trouble. I’ve been fortunate to have had OCT scans for several years now.
The practice where I receive retinal care also performs a type of procedure known as fluorescein angiography, to which I had a very negative reaction and ended up on the floor vomiting in 2014, so I naturally asked Dr. Ben his thoughts on this procedure.
“It’s a barbaric technology,” he said. “Fluorescein angiography involves a dye that we inject – 5ccs no matter how much the patient weighs. If you’re petite, you get 5ccs and I may be giving you a heck of a lot of dye and your stomach is going to contract. The use of it is to see how the circulation of the eye is. There is a place for it. Ten years ago, we did probably 200 angiograms a month for various reasons, but now with the technology we have, we probably do 15.”
A greater risk of a fluorescein angiogram than nausea and vomiting, of course, is that 1 in 222,000 people can actually die from a reaction to the procedure. Dr. Ben spoke heartbreakingly of a patient dying in the chair during an angiogram he administered. “If I lost one patient, right in front of me, because we did the angiogram (and this was 25 years ago), I have to say why did we have to use this?”
Dr. Ben and his amazing team of students are working to change the standards. His medical school students pay their own way to conferences like Friends for Life because they are dedicated to the cause. They also provide screenings at churches, schools, soup kitchens, shelters, and community events, working in the U.S., Latin America, Haiti, the Philippines, and the Middle East. He chooses those students who are good with children and ready to work, and he encourages both optometry and opthalmology students to participate so that, when they graduate, they understand one another and continue to help one another rather than work in isolation.
This year, Dr. Ben will be back at Friends for Life and I will sit with him for my third annual screening with his amazing equipment. I learn more in those 30 minutes going through his various stations with his students than I do at my annual and semi-annual ophthalmology and retinal checkups. But my belief in him goes beyond his remarkable technology. His bedside manner – the way he danced in front of me when he learned I’d had two healthy pregnancies, the way he put his hand on mine and explained that the retinal thinning (indicative of my 25 years with diabetes) was not to be feared and not to be ashamed of. “It’s nothing you did. Nothing you did,” he said, squeezing my hand. “It’s just time and diabetes. We see these changes.”
I believe in technology and I believe in compassion, and doctors like Ben Szirth embody both. If you’re attending a Friends for Life conference in 2015, I encourage you to schedule a retinal screening with his team. And if you’re not attending a conference where you might have such an opportunity, please pursue a regular annual dilated eye exam with an eye care professional, and you might mention how great you think it would be if the practice got themselves an FAF camera and an OCT machine.
Thank you for one of the best articles I’ve read on eye care for PWD! After 38 years living with diabetes, I’ve been told I have some very small “spots” of retinopathy, which is terrifying. But nothing recommended other than get my a1c down, which has been right around 6.8-7 for years…
I’ll talk with my new ophthalmologist next time with much greater info and better questions to ask. Thank you!
I do hope to come to FFL one day! Ben, it would be amazing for you to come present at our annual CDA conference about your work…. this year it is connected to the IDF conference in Vancouver as I am sure you are aware. So many of the educators or allied health people like me would love to hear more about your work!
Thank you Melisa for spreading the importance of sceening!
Thank you Michelle for your kind words – Hope to see you at Friends for Life and meeting a fellow Canadian ;-)
Great article and how amazing to read about any physician so dedicated and compassionate. Especially an opthalmologist! In Canada, these doctors are among the top paid specialists, but their communication skills are generally very lacking. People with diabetes go to these appointments filled with fear and leave anxious and confused. You really have to demand better communication and it often helps to take a family member with you for support. thanks for this Melissa!