When Blindness Comes Too Soon - A Story About Macular Degeneration

When Blindness Comes Too Soon

When 24-year-old Amy Bower sat down for a routine eye exam, she never expected that her blurry vision was actually the onset of a disease that would leave her legally blind.

A graduate student at the University of Rhode Island, Bower feared she may be forced to abandon her dreams and the exciting oceanographic career she loved.

Now, more than 20 years later, Bower is an oceanographer at the Woods Hole Oceanographic Institute in Massachusetts -- and a poster child for vision rehabilitation.

"When I first heard that I had macular degeneration, I thought, 'What's that?'" she said. "I had never heard of anyone with this disease.

"When I heard that my vision was going to continue to degenerate with no real prediction of how far, I was pretty scared... and quite sad."

Age-related macular degeneration or AMD is among the leading causes of blindness in the United States, and the number one cause of blindness among Caucasians. About 1.8 million Americans suffer from AMD, and another 7 million are at a significant risk of developing the disease, according to the National Eye Institute at the National Institutes of Health.

Amy Bower and the Woods Hole Oceanographic Institute

Oceanographer Amy Bower began losing her vision in her teens -- but she has not let her impending blindness ruin her career goals.

"The disease slowly destroys the central portion of a person's vision, affecting their ability to read, drive and recognize faces," explained Dr. Gerald Friedman, a Boston low vision specialist who treated Bower when she was first diagnosed.

What sets Bower apart is that she has the rarer juvenile form of the disease, which strikes earlier than most. Currently, there are no approved drugs or therapies that can help her.

The signs were there. Bower had suffered blurry vision since her teens. But shortly after the official diagnosis in her early twenties, her vision took a very rapid turn for the worse.

"Before I knew it, I couldn't read the text in a paperback book," Bower said. "Then, within two years, even by adjusting the text on a computer screen, I couldn't read the words on the computer."

That's when she turned to Friedman, one of the few specialists in the country who focus solely on low vision rehabilitation.

Working Through Macular Degeneration

"Most people who are legally blind have some degree of vision left, so my job is to find where that vision is and design a method to use it," Friedman said.

In Amy's case, she also suffered from a condition called retinitis pigmentosa, which degrades the peripheral vision, leaving her with just a thin ring of usable vision.

"Most people define successful rehabilitation as being able to read their favorite book, or recognize their family members," Friedman said. "But Amy's particular needs were a huge challenge because she was going to be on board research vessels and using all kinds of equipment -- so we threw everything we had at her in terms of technology and she just absorbed it."

Today, Bower travels the world, leading scientific missions on sea currents -- and she does it all by using adaptive equipment and other resources.

Large video magnifiers allow Bower to read data printouts and graphics mapping deep sea temperatures. Meanwhile, powerful computer voice and magnification software allow her to use the computer just as well, if not better than most fully sighted people.

"If it weren't for these powerful programs, I wouldn't be able to do my job."Bower is currently looking forward to new adaptive technologies that would make data readouts more tactile, possibly eliminating the need for video magnifiers. She is also hopeful about new retinal transplant studies, for which the first clinical human trials are currently underway in Europe.

"The stem cell trials are the most promising hope for a treatment," said Dr. Marc Gannon, director of the Low Vision Institute in Fort Lauderdale, Fla. "Not only might we be able to repair vision that's already been lost, but this research could help identify the genetics that cause the early or juvenile forms of the disease, helping us to stop the vision loss before it even begins."For now, Bower, who is also a married mother of one, said support from her family and her employers at the institute, who helped purchase most of her equipment, has been key.

"For anyone who finds themselves in the situation I was in 25 years ago, they need to learn to become a very strong self-advocate," Bower said. "And hopefully, you want to pursue something that you're passionate about, because you're going to need the energy that comes from such a passion to push through the challenges."

By JAMIE BLANCO
ABC News Medical Unit

Oct. 19, 2009

Protect Your Eyes Around the Home

Believe it or not, better weather here in the Cleveland area is just around the corner!   With more good weather more activity outside will take place and this is another chance to remind you of your eye safety.

What do a bungee cord, a pan of frying bacon and lawn-care chemicals have in common? 

They are just a few of the common items around the house that can cause eye injuries, which are
increasingly occurring at home. In fact, nearly half of the 2.5 million eye injuries that Americans
suffer annually now happen in and around the home in common places like the lawn, garden,
kitchen or garage.

“People need to be aware of the everyday dangers to their eyesight that lurk in the home,” said
Tamara Fountain, MD, an ophthalmologist and spokesperson for the American Academy of
Ophthalmology. “It is far easier to prevent an eye injury than to treat it. Ninety percent of all eye 
injuries can be prevented by simply wearing protective eyewear.” 

The Academy and the American Society of Ocular Trauma (ASOT) recommend that every
household in America have at least one pair of ANSI-approved protective eyewear to be worn
when doing projects and activities at home to safeguard against eye injuries. ANSI-approved
protective eyewear is manufactured to meet the American National Standards Institute (ANSI)
eye protection standard. ANSI-approved protective eyewear can be easily purchased from most
hardware stores nationwide and can be identified by the mark "Z87" placed on the eyewear.

“Slipping on a pair of safety glasses is quick and easy,” Dr. Fountain says. “People should use 
protective eyewear during any potentially hazardous tasks around the house, from cleaning your 
oven with a chemical cleaner to using bungee cords to hold items in place. In the event that you 
do suffer an eye injury, have an ophthalmologist examine the injury as soon as possible, even if 
the injury seems minor at first.” 

This article reprinted with permission from the American Academy of Ophthalmology's EyeSmart 
Campaign (www.geteyesmart.org).

SkyVision doctors and optical department can help you with a pair of safety glasses for whatever your needs are.  Just give a call and see what your options may be.

A Patient-Centered Approach To Eye Emergencies

                                 

We all have an occasional medical emergency. What happens in Cleveland when you have an eye emergency? What does "same day appointments" mean, the ones that you see on the big billboards around our town? Well, here's what it means if you are a Skyvision Centers patient: you are seen by a Skyvision Centers doctor in the Skyvision Center office you know and love RIGHT AWAY!


                               
It's very hard to know as a patient what is and what really isn't a true emergency. The staff members who answer our phones have been trained to ask you important questions to determine if you have the kind of emergency that requires you to come in on the day you have called. Curtains or shades coming over your vision? Come right in. Pain in the eye that is new and just won't go away? How fast can you get here?

How about nights and weekends? Yup...then too! Dr. White was out of town this weekend and he received a call on his personal cell phone from a patient with a family eye emergency. They were told to come right in. If you have an eye emergency at night or on the weekend a Skyvision Center eye doctor will see you even then.

If it seems like your problem is urgent but not an emergency our staff will discuss the timing of your visit, especially if we or you are very busy that day and we are trying to avoid a big wait for you. But in the end, a patient-centered approach to eye emergencies, the SKYVISION CENTERS APPROACH, is that if you are very concerned about your new eye problem we will find a way to see you that day. That's what Patient-Centered Medicine means at Skyvision.

Do you think that's what they mean on all those billboards around Cleveland?

Tools for Patients’ Education

BY DARRELL E. WHITE, MD

Educate cataract patients before they even arrive at your office for the examination.

Cataract surgery is one of the most successful surgeries in all of medicine. It also enjoys a very low

complication rate. With the aging population in this country, most patients know someone who has undergone the procedure. In addition, the newest IOL technology offers patients the possibility of excellent

vision at all distances without glasses. Efficiently and effectively educating patients on cataracts and the options for IOLs, however, can still be a challenge. In my practice, we have found that an effective patient education plan starts as soon as the individual contacts our office. The plan provides patients with ample opportunity to familiarize themselves with their pathology and the treatment

options before they have any decisions to make.

PATIENTS’ EDUCATION STARTS EARLY

When a patient makes an appointment with our office, whether he or she was referred by an optometrist,

a patient who is a friend or family member, or is following up from a previous experience in our office, the front office staff member always asks for certain demographic information including age and e-mail address. For the 50% to 60% of patients from whom we are able to obtain an e-mail address, we send them an introductory message before they come in for their appointment. For patients in the cataract demographic, the e-mail message they receive includes information about our office and links to interactive educational software (ECHO, Eyemaginations, Inc.) about the pathophysiology of cataracts as well as an introduction to premium lens options for the patient to view.

When the patient arrives at the office, the file is “flagged” to identify him or her as a cataract patient. A technician escorts the individual into the examination area, takes the history, and begins a diagnostic evaluation.  If it is clear that the patient has a cataract, his or her visual function is measured in several different ways including tests to determine the level of astigmatism. While the patient is waiting for the dilating drops to take effect, the staff has him or her watch a simple video of me explaining the cataract process, what the experience is like, and informing him or her about lens options. I emphasize that all of the implants are good options and he or she will see well with each of them. Then, I outline the differences between what we call the basic high-tech implant, the advanced distance high-tech implant (a toric IOL), and the advanced distance and near implant (a presbyopia correcting IOL). During the dilation, the staff will also play educational videos on the Eyemaginations LUMA platform in the examination rooms to reinforce the information that the patient has already received.

PRE-EXAMINATION BY THE OPTOMETRIST                     

Once the patient is dilated, an optometrist performs the pre-examination to determine whether or not the patient can be corrected with spectacles and also evaluates the cataract’s size and severity. The optometrist expands on the information provided in the educational video, reintroduces the concept of choice, and alerts the patient to whether or not all three options are available. For example, we know that if the patient has macular degeneration, a presbyopia-correcting IOL is likely not an option. The optometrist also encourages patients to fill out a lifestyle survey and dives a little deeper into their visual life: how do they use their eyes, what activities do they participate in, and what is most important to them. The goal is to find out what will make patients the happiest.

SURGEON’S ROLE

This is the point at which I come in, confirm the diagnosis, determine whether the patient is a surgical candidate, and answer any questions. After I review the IOL options, I ask the patient to make a choice regarding which implant he or she would like to receive.

Nationwide, approximately 9% of cataract patients choose a premium IOL, according to Market Scope. Our conversion rate was consistently 22% until about 3 years ago when we made two distinct changes. First, I created the video that we have all cataract patients watch while their eyes are dilating. Second, we started e-mailing all possible cataract candidates the ECHO educational software about cataracts and the premium lens options. Since we have implemented those two strategies, the percentage of patients that choose premium IOLs has increased to 35% and has remained at this figure for the last 2 to 3 years. 

Our patients’ experience has always been centered on trying to access their learning strategies in as many different ways as we can. We interact with them verbally, we provide printed material, and because we know many people are visual learners, we offer interactive media as well.

TIMING OF EDUCATION

In addition to the specific materials, timing is a very important element of patients’ education. The first time

patients hear that they have a cataract, they are not really able to pay attention to anything else. Although they may have friends or family members who have undergone successful procedures, they are still trying to mentally digest the diagnosis. By our office sending an email and starting their educational process at home before they ever come into the office, we have moved that emotional reaction upstream from the decision point.  When I meet with cataract patients in the examination room, they have accepted their diagnosis, they have been educated on the disease’s pathology and the surgical procedure, and I am able to answer any remaining questions.  I can then help them decide which IOL is right for them. I spend less time explaining what a cataract is and more time discussing what constitutes their visual life, what things are important to them, and how they use their eyes. I believe that my patients now are more comfortable with the decisions they make.

It is very frustrating for physicians and patients when a  patient chooses a standard IOL and then has “non-buyer’s remorse”—they wish they did not have to wear reading glasses, for instance. Today, that does not happen as often as it did previously because patients have been presented with the information on the IOL options several times before they are required to make a final decision.

CONCLUSION

After discounting the first 2 years of explosive growth in the practice, we have consistently grown 8% to 11% each year with no external marketing and a very small, dedicated base of referring optometrists. Although it is difficult to measure exactly, our best guess is that our growth has come from referrals from satisfied patients: we simply encourage our patients to send their friends, family, and colleagues to our practice. I believe a large part of our success is that we very openly make every effort we can to educate our patients about their disease process. Our patient-education plan is a central part of what our version of a patient-centered medical experience should be. 

Darrell E. White, MD, is the founder of Skyvision Centers of Westlake, Ohio. He is a consultant to Eyemaginations, Inc. Dr. White may be reached at dwhite2@skyvisioncenters.com.

Advanced Ocular Care Magazine March 2013

Dancing Water - More Cool Things to See With Your Eyes

We just shared some creative art by artist Fabian Oefner yesterday and now we are sharing a clever experiment involving sound and water that will delight your eyes!

At SkyVision we always keep our eyes out for interesting demonstrations, articles, photographs, videos etc. and this demonstration on YouTube is really fun!




Where would we be without the ability to see and enjoy such creativity?


More Cool Things To See With Your Eyes - Dancing Water

Black Hole - Paint in Motion by Fabian Oefner

At SkyVision we always keep our eyes out for interesting articles, photographs, videos etc. and this article and series of photographs is a perfect example.

This article caught our eyes because of the vibrant colors and clever technique used to create the pictures.

Where would we be without the ability to see and enjoy such wonderful creations?



Click on this link    Cool Things We Can See With Our Eyes!   to view some incredible work by Swiss artist Fabian Oefner

Enjoy!

Treating Astigmatism In Patients With Cataracts

Modern cataract surgery is not your grandfather's surgery! If you have asigmatism we can not only make you see better over-all, but we can also treat your astigmatism. Dr. Darrell White is an expert in using Intra-Ocular Lenses (IOL's) that correct astigmatism.

A cataract is a clouding of the natural lens inside your eye. The lens sits in back of your pupil. As we get older the lens becomes harder, making it harder to focus. This is why we need reading glasses in our 40's. As we get even older (and sometimes in younger people, too), part or all of the crystalline lens becomes cloudy, sometimes yello-brown, too. This makes our vision blurry even with glasses or contact lenses. When that happens the only treatment is to take the cataract out.

If you have astigmatism you can choose to NOT HAVE TO WEAR GLASSES for most (maybe all!) of your far-away vision. You can choose to have Dr. White put in a Toric IOL, an implanted lens to give you clear vision AND correct your astigmatism. Imagine...after a life of glasses and contact lense for astigmatism...after cataract surgery you could choose not to have to wear glasses for lots of your far-away vision!

If you live in the Cleveland area Dr. Darrell White and Skyvision Centers in Westlake are the people and the place for expert treatment of astigmatism when you have cataract surgery!