Imagination and KC

Imagination is a powerful thing. It can take you to great heights or take you into a downward spiral. I know. It’s done both to me. Thirty years ago I was diagnosed with keratoconus (KC) in both eyes. Then, I wasn’t sure what it was all about and my imagination took over spinning out all kinds of scenarios. Was I going to go totally blind? Would I be able to continue working? Would I still be able to drive? Was I scared then? Yes!

Imagination and KC
Over the years I’ve been through many of the ups and downs KC’ers face – uncomfortable lenses, vision changes, cornea abrasions, the piggyback system and pushing the limits of lens wear-time. The KC in my left eye deteriorated and a cornea transplant was the only option left. In the early 80s, my surgeon performed the transplant while listening to tracks from Michael Jackson’s album, Thriller. The transplant gave me the vision I needed stay in the workforce. I travelled for business, spent hours in front of a computer, belonged to a bowling league, walked on a glacier, climbed a fraction of the Great Wall, shed inhibitions in an acting class, answered crisis hotline calls, took “artsy” out-of-focus photos and gazed into the innocent, perfect eyes of my grandsons.

Everything wasn’t all rosy. There were highs and lows throughout those years because my other eye with KC kept going downhill before it stabilized. I still encountered all those difficulties KC contact lens wearers face when lenses are critical to functioning. But, I never let KC take over my life. Sometimes after I tried something new, I had to concede that vision challenges lessened the enjoyment and I labeled it “not for me” and moved on to something else.

I’m retired now and am sixty-nine. Now, my transplant cornea has filamentary keratitis and chronic dry eye so wearing a RGP lens is out. I’m at 20/200 in that eye but am still thankful for the good vision years. My other eye fluctuates between 20/50-60 with a RGP lens but comfortable wear-time is down to 3-4 hrs. Old anxieties have resurfaced. I live alone. Is driving my golf cart over? What am I going to do? “Explore your options,” my inner voiced commanded. So, I tackled the worst-case scenario first – what if I can’t wear any kind of lenses even scleral? I researched tools and services available to those with all kinds of vision problems. I visited the Southeastern Guide Dog Campus in Palmetto, FL in the US and learned all about Seeing Eye guide dogs. They’re amazing! My doctor started conversations about scleral lenses but that got put on hold.

Why? I was in the middle of a huge project. My imagination was taking me to great heights in this project. I was at the critical stages of writing a novel. It required my full attention. Fitting sessions and lens adjustment time would derail my momentum or even force me to take a detour off my route to my destination of having my novel catalogued in Books in Print. I didn’t need high functional vision to imagine scenes and characters. What I did need was a soft contact to act as a bandage to alleviate the pain of filamentary keratitis in my left eye. The soft lens worked! I published Juror 1389 – Dorsie Raines Renninger! Did vision challenges hinder me? Yes, at times. But, I pushed on and worked with what vision I had. I adapted – I bumped up MS Word font size way beyond 200%. I set an alarm clock to signal a stop after two hours of screen time. I removed my RGP lens and took eye-soothing breaks. I used various colors of paper for my research subjects so I could find notes easily. Thera® Tears were constant buddies. And, I asked for help! I formed a 1389 project team with good vision. They read. They highlighted mistakes to correct. I’m 100% certain any reader of Juror 1389 would never guess the author had vision challenges. Why would they? It’s of no importance to them. They’re only interested in what my imagination produced – a good story, a good read.

My message to all KCers is this – KC is a life altering condition not a life threatening condition. Don’t let keratoconus threaten your life or how you live it. Make these two words your mantra – Accept and Adapt. Make peace with what vision you have or will have. Accept it. Move on. Move towards being the best you can be in spite how out-of-focus the world looks to you. Life is not perfectly focused for anyone! Adapt – seek out tools and invent ways to change how you do things. Discover “what works” for you. Learn to ask for help. And remember, imagination is powerful. It has crisp, clear vision. It’s always there. Use it to visualize anything you want or what kind of life you want to live.

1/22/15

Gerry Trickle
Author, web content and greeting card verse writer
She is now working on her next novel – learn more at: www.gttrickle.com

Cataract Surgery and Keratoconus

1/8/15

The eye works like a camera, specifically a digital camera. There is the front lens of the camera (cornea), the aperture (iris), the film (retina), and a cable to take the image to the brain (optic nerve). This “camera” also has an additional lens – the natural crystalline lens, which lies behind iris. This natural lens is flexible when we are young, allowing us to focus at distance then instantaneously up close. Around age 40-45, this natural lens starts to stiffen, necessitating the need for reading glasses for most people. This stiffening is the beginning of the aging process that eventually leads to formation of a cataract. We refer to the lens as a cataract when it becomes sufficiently cloudy to affect ones quality of vision. In general, cataract surgery is one of the safest and most successful of all surgeries performed. The basics of cataract surgery in eyes with keratoconus is very similar to non-keratoconic eyes.

Keratoconus (KC) affects this “camera” by causing the front lens (cornea) to bulge. This causes the optics to be distorted. In many cases, this can be corrected for with hard contact lenses (CL) or spectacles; in other cases a corneal transplant may be necessary. When it comes time for cataract surgery in the setting of KC, there are several factors that need to be considered.

Corneal Stability
The first thing to be considered is the stability of your cornea. In general, KC progresses more in your late teens to early twenties, and then stabilizes with age. A very exciting treatment for KC is collagen crosslinking. This treatment is meant to stiffen the cornea to prevent instability that is inherent to KC. This treatment promises to stop the progression of KC at a young age. Fortunately, with age, the cornea naturally crosslinks and stiffens, therefore when it comes time for cataract surgery, there is little chance of the progression of KC. Your doctor needs to choose the appropriate intraocular lens (IOL) to refocus your eye after surgery. Two of the most important factors in IOL selection are the length of your eye and the shape of your cornea. Long term CL wear can mold your cornea. It is important to assure that you stay out of your CLs long enough for your cornea to reach its natural shape. Depending on how long you have worn your CLs, it may take several months for the cornea to stabilize. This time can be challenging as your vision will be suboptimal (because you can’t wear CLs), and will be changing (as your cornea reaches its natural shape). When your cornea does stabilize, it is important to determine whether the topography (shape) is regular or irregular. This “regularity” is also known as astigmatism. If the astigmatism is regular, light is focused as a line – generally, this distortion can be fixed with glasses. However, if the astigmatism is irregular, light cannot be focused with glasses, and hard CLs are needed to provide optimal focusing. If you have had a corneal transplant, I generally recommend all your sutures to be removed to allow your new cornea to reach its natural shape.

IOL Selection
The second thing to be considered is the type of IOL. IOLs allow your doctor to refocus the optics of your eye after surgery. In many cases, the correct choice of IOL may decrease your dependence on glasses or CLs. There are several factors that are important when considering the correct IOL for a keratoconic patient. The amount and regularity of your astigmatism plays a very significant role in IOL selection. In general, there are four types of IOLs available in the US – monofocal, toric, pseudo-accomodating, and multifocal. In general I do not recommend multifocal IOLs in patients with KC. These IOLs allow for spectacle independence by spitting the light energy for distance and near, however, with an aberrated cornea (which is what happens in KC), these IOLs do not fare well. If there is a low amount of regular astigmatism or irregular astigmatism, your best bet is a monofocal IOL. This is the “standard” IOL that is covered by your health insurance. If you have higher amounts of astigmatism that your doctor determines is mostly regular, you may benefit from a toric (astigmatism-correcting) IOL. These IOLs can significant improve your uncorrected vision and really decrease your dependence on glasses. It is important to realize that monofocal and toric IOLs only correct vision at one distance. With a monofocal IOL you still can wear a CL to fine-tune your vision, however, with a toric IOL, in general you will need glasses for any residual error. There is a pseudo-accomodating toric IOL available, and this may be a good option if you are trying to decrease your dependence on glasses and correct some of your astigmatism. These IOLs are relatively new to the US market.

If You Had A Corneal Transplant
In the setting of a corneal transplant many of the same factors need to be considered – stability of the graft, choice of IOL, etc. In addition, the health of the graft has to be judged. Prior to cataract surgery in my patients with corneal transplants, I make sure to remove all of their sutures and give the cornea time to stabilize (just as if they were a CTL wearer). If you are a CL wearer, the same rule of being out of the TL until the topography is stable applies. The health of a transplant needs to be established prior to undergoing cataract surgery. The cornea has five main layers to it – the back layer (inside) is called the endothelium. This layer is responsible for “pumping” fluid out of the cornea, allowing it to stay clear. In all eyes there is a loss of endothelium cells with cataract surgery. I generally perform a “specular microscopy,” which allows me to visualize and quantify the corneal endothelium prior to surgery. This allows me to risk stratify you before your surgery. It is important to realize that corneal transplants have a lifespan and may have to be repeated in the future.

Keep in mind, there is some uncertainty in biometry (the process of selecting an IOL) in all eyes – this error can be higher in keratoconic eyes. This highlights why assuring stability is important. Equally important is picking the correct IOL for your situation. Also, keep in mind that I have discussed generalities in this article. Your individual case could be different. This is a conversation best left between you and your surgeon. In general, cataract surgery and keratoconus or a corneal transplant can be a very safe and effective way in restoring vision.

Sumit (Sam) Garg, MD
Interim Chair of Clinical Ophthalmology and Medical Director
Gavin Herbert Eye Institute at the University of California, Irvine

Winter Weather and Your Eyes

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Can Keratoconus Progression Be Predicted?

12/9/14

This article on keratoconus progression is from the National Keratoconus Foundation’s monthly e-update. To receive this valuable source of KC information to your inbox, you can subscribe here.

Neutrophil-to-lymphocyte (NLR) ratio is a new potential predictor of systemic inflammation in several diseases. The aimed of this study, conducted by a group of researchers in Turkey, was to evaluate NLR ratio in patients with keratoconus.

The study included 54 patients with keratoconus and 25 age- and sex-matched control subjects. All participants underwent a detailed ophthalmological examination and corneal topography. The KC patients were divided into progressive and non-progressive keratoconus groups on the basis of topographic parameters. Serum samples were obtained from all subjects, and the NLR ratio was calculated.
The study authors reported that the NLR ratio was 3.27 ± 1.37 in the progressive keratoconus group versus 1.87 ± 0.39 and 1.87 ± 0.52 in the non-progressive and control groups, respectively (p<0.01). They also observed that there was a positive correlation between the NLR ratio and progression (p<0.05). In the receiver-operating characteristic analysis, an NLR ratio ? 2.24 predicted the presence of progression with 79% sensitivity and 81% specificity.

The NLR ratio is a simple and inexpensive marker of systemic inflammation. The NLR ratio was found to be higher in patients with progressive keratoconus than in the non-progressive group and controls.

SOURCE: Neutrophil-to-lymphocyte ratio may predict progression in patients with keratoconus. By Karaca EE1, Ozmen MC, Ekici F, Yüksel E, Türko?lu Z.
Cornea. 2014;33(11):1168–1173.

Catherine Warren, RN
Executive Director
National Keratoconus Foundation
A program of the Discovery Eye Foundation

Adjustments Can Help With Depression

11/25/14

Eye disease can lead to isolation and depression. But making some adjustments can help with the depression. Robin Heinz Bratslavsky (pictured below with her oldest son) was diagnosed with keratoconus (KC) 20 years ago at age 25. Now a mother of two who works from home as a freelance editor. She participates in NKCF’s KC-Link.

When I was diagnosed with KC, I was an editor at a major women’s magazine. The diagnosis didn’t mean much to me at the time. Things changed when I was fitted with RGPs. I had limited wear time and pain, and I started to feel anxious about my career. There were times I had to leave work early and drive to my eye specialist — several times a week. As a young editor in a highly competitive field, I was concerned these absences would interfere with my ability to move up at the magazine.

When I had my first child, my husband and I decided I would stay home with him and work on a freelance basis. I’ve been doing this for 14 years now. Through a series of corneal abrasions, infections and lens-tolerance issues, I have had to rely heavily on my husband and family and friends to drive me and my children when my eyes would not cooperate. I have had moments of extreme despair, because I am not used to being so dependent. My husband works incredibly long hours, and he used to travel a lot. I was always worried I would not be able to drive my children in an emergency.

As my KC has progressed, I have moments in which my normally well-controlled clinical depression manifests, and I feel helpless because of my vision limitations. My sons are both avid soccer players, and I miss a lot of their on-field accomplishments, because I simply cannot see well enough.

At this point, I wear Kerasoft lenses, and I have had Intacs placed in my right eye. My vision, corrected, is about 20/30, but that can vary from day to day. After 20 years, it appears my KC is stabilizing, so I have a pair of emergency glasses; they get me to approximately 20/60, so I can’t drive, but I can function somewhat around my house to give my eyes a break. I’ve been living with KC for a long time; it’s a manageable disease — as long as you are willing to make some adjustments.

Robin Heinz Bratslavsky
Keratoconus Advocate

Living With KC Isn’t Easy

10/23/14

The Discovery Eye Foundation Fall 2014 e-newsletter focused on depression and eye disease. At the time we asked for people that were willing to share their stories. Jennifer Villeneuve is one of the many that responded. She is 26 years old and lives in Ontario, Canada. A participant in KC-Link, she talks about the emotional toll keratoconus has taken on her life and living with KC.

At age 13, I was diagnosed with keratoconus and given RGP lenses, with which I struggled intensely. ?I became very quiet, and my bubbly personality disappeared. The lenses often got irritated and made my eyes water and turn red, which made me look like I was crying. My doctor didn’t really give me much information on the disease. He just told me my corneas were the shape of footballs instead of circles.

I couldn’t be a normal teenager. I often squinted and had red eyes, which made me very self-conscious. I couldn’t wear makeup or have a free-for-all teenage life. I had to worry about my lenses and what people saw when they looked at me. Some people knew about my KC, but not many. I was just that quiet person who squinted. Because of this, my self-esteem got very low. All in all, my high-school life was hell.

Every time I went to the doctor, he said my pain is normal, the discomfort is typical, and I needed to get used to it. I was also diagnosed with two learning disabilities, in addition to my vision impairment. Throughout high school, I had major anxiety and depression, though I never wanted to admit it. A close teacher even spoke to my mom about the anxiety and low self-esteem. I got through high school, still with the depression being untreated — and still with the same doctor who never even sent me for a topography scan. Each time I went in, it was, “Yup your eyes the same; see ya.”

In college, I was diagnosed with depression and anxiety and was finally getting treated. ?I also went to the University of Ottawa Eye Institute of The Ottawa Hospital in Ontario, Canada. They did topographic scans; my KC had gotten significantly worse. My contacts’ sizing changed twice that year. Again, I couldn’t be normal. College students go out partying, but not me. I stayed in my room by myself. I worried whether I could see enough to go out. What if I drank too much and lost a lens? It wasn’t worth the risk, especially given how expensive they are. In college, I got great help and acceptance. My teachers all knew about my KC, and I was set up with the Centre for Students with Disabilities at Algonquin College in Ottawa. They were my backbone and my support.

After my two years in college, I moved on to my career working with children. At each job, I had to explain why I always had a mirror and my contact stuff. At first, I was ashamed and almost embarrassed, explaining why I squinted and that I may not be able to read a kids’ book if the writing is too small. Not only did I get accepted by coworkers, but also by the kids. They knew my eyes were red from my contacts or that my tears meant something was in my eye. I began working in with special-needs children, which was incredible but also challenging — especially in ensuring my eyes were at their best.

At this same time, my vision had gotten worse. I went for corneal crosslinking (CXL) in one eye. I had to take? time off from work, which caused a lot of stress. Unfortunately, there were complications from the CXL. I had a scar in the same eye that caused the crosslinking to be difficult and not as successful. When it came time to do my other eye, I was hesitant, but I needed it. It worked, and the disease slowed down.

A year or so later, the disease had a spike and caused my eye to rub on a lens and make a blister. I had laser surgery to get rid of that and the scar, too. Because KC isn’t covered by insurance in Ontario, I had to pay for every lens, every $11 bottle of solution and countless eye drops. It was expensive, and money was a struggle. I still struggle with the costs of things.

I also have to worry about eye infections. Since I work with kids, they are easy to get, but if I get an eye infection, I can’t wear my contacts, which means no driving, which means no working, which means no money. Things can snowball so quickly.

My vision is up and down. My lenses don’t last as long in my eyes as they used to, and my nighttime vision can be scary. I have to be extra-vigilant. Again, I can’t be normal or go somewhere unfamiliar at night. I’m always concerned. My lens fitter recently recommended scleral lenses, but I can’t afford them. I barely could afford the $2,000 for the CXL.

Living with KC isn’t easy. I can’t help but wonder how long I’ll have the vision I have now. Am I going to be blind in a few years? If I have children, will they have this, or will I even be able to see them? Will I find a guy who would want someone with the possibility of losing vision? I have to stop myself from thinking ahead, or the anxiety gets the best of me.

Jennifer Villeneuve
Keratoconus Advocate

15 Things Doctors Might Like Us To Know

10/16/14

The Doctor Patient Relationship

Doctors are human. Professional decorum may not let them speak their minds and for that reason, I have gathered comments heard from eye doctors with whom I have been privileged to associate as a so-called “expert patient”. These may not speak for all, but I do think they represent the majority. Here are 15 of the most important, which we might benefit from hearing.

1. Your eyes are growing older, and I can’t turn back the years in an aging retina. I can, however, help you try to maintain your current vision for as long as possible.

2. Your appreciation means a lot. Don’t hesitate to compliment me if I have earned it.

3. I have quite a few patients who need my help and don’t want to be kept waiting. So I don’t have to keep repeating myself, please take notes, or bring someone with you who can refresh your memory later.

4. It is important that you comply with my instructions and show up for appointments if you want the best results.

5. My specialty is eye care. I will, however, try to provide you with resources for other ailments you may have.

6. Please be concise with your questions and stay on topic, so I’ll have time to treat other deserving patients.

7. Don’t believe everything you see in the media unless the source is reliable. If the information isn’t based on good evidence, my response to you may be disappointingly negative.

8. My services may seem expensive, but I have so many expenses and debts resulting from my profession that my bottom line may not be much different than yours.

9. An ethical physician will not choose a particular drug or treatment by how much of a profit he can make prescribing it.

10. I might not agree with everything you say, but rest assured that I will never let it affect the level of care I will provide.

11. Don’t expect me to keep all eye research in my head. I do know where to look it up, so allow me some time to get back to you on some questions.

12. Conferences I attend are sometimes in exotic places, but most of the time is spent going from one event to another, so it is really not a vacation.

13. Even if there is no current effective treatment for your eye disease, I still need to see you regularly to monitor your condition. Regular check-ups are important to your health and preventative care and treatment options are changing all the time.

14. I may not remember you personally, especially in the beginning or if I see you only see you once or twice a year, but your records contain everything I need to know to care for your vision.

15. I may not agree with your decision to try an alternative treatment, but I respect your right to do so. All I ask is that you seriously consider my opinion, and if you decide to go ahead with the treatment on your own, please keep me in the loop so I can monitor your condition.

We should try to understand that doctors are human beings who truly care about our welfare. Doing so could turn a top-down doctor-patient relationship into one of mutual respect and understanding. We might even get a few extra minutes of precious time in the chair, just because we’re a pleasure to have around.

Dan Roberts
“Expert Patient”

Our Thanks to Guest Bloggers Continues

10/7/14

More Amazing Guest Bloggers

Last week I took the opportunity to thank our very first guest bloggers for helping us launch the Discovery Eye Foundation Blog. We are pleased that so many people appreciate the wide range of eye-related information from eye care professionals, as well as the stories from people that live with eye disease on a daily basis.

Here is a round-up of guest bloggers since June 2014 that shared their time, experience and/or expertise to provide you with the best eye-related information.

Sumit “Sam“ Garg, MD – what you should know about cataracts

Randall V. Wong, MD – floaters, causes and treatments

Roy Kennedy – his personal experiences with the miniature telescope implant

Sandra Young, OD – the importance of getting vitamins and minerals from your food and not just supplements

Jeanette Hasseman – living with keratoconus

Greg Shane – theater for the blind

Caitlin Hernandez – blind actress and playwright

Jullia A. Rosdahl, MD, PhD – lasers for glaucoma and genetics and glaucoma

Maureen A. Duffy, CVRT – ways to reduce harmful effects of sun glare

Kooshay Malek – what is it like to lose your vision and being a blind therapist

Jeffrey J. Walline, OD PhD – children and contact lenses

Robert Mahoney – choosing a home care agency

Robert W. Lingua, MD – nystagmus in children

Buddy Russell, FCLSA, COMT – common pediatric eye diseases, treatment options for children and pediatric contact lenses

NIH (National Institute of Health) – telemedicine for ROP diagnosis

Harriet A. Hall, MD – evaluating online treatment claims

Patty Gadjewski – the life-changing effects of a telescopic implant

Michael A. Ward, MMSc, FAAO – proper contact lens care and wearing contacts and using cosmetics

Susan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Our First Three Months Of Eye Care

9/30/14

Discovery Eye Foundation Blog’s First Three Months

It is hard to believe, but this blog has been providing information and insights into eye disease, treatment options, personal experiences of living with vision loss, and other eye-related information for seven months.

All of this would not have been possible without the expertise of remarkable eye care professionals who took time out of their busy schedules to share information to help you cope with vision loss through a better understanding of your eye condition and practical tips. Since so much information was shared in the seven months, here is a look at the first three months, with the additional four months to be reviewed next Tuesday.

I am very thankful to these caring eye professionals and those with vision loss who were willing to share their stories:

Marjan Farid, MD – corneal transplants and new hope for corneal scarring

Bill Takeshita, OD, FAAO, FCOVD – proper lighting to get the most out of your vision and reduce eyestrain

Maureen A. Duffy, CVRT – low vision resources

M. Cristina Kenney, MD, PhD – the differences in the immune system of a person with age-related macular degeneration

Bezalel Schendowich, OD – blinking and dealing with eyestrain

Jason Marsack, PhD – using wavefront technology with custom contact lenses

S. Barry Eiden, OD, FAAO – contact lens fitting for keratoconus

Arthur B. Epstein, OD, FAAO – dry eye and tear dysfunction

Jeffrey Sonsino, OD, FAAO – using OCT to evaluate contact lenses

Lylas G. Mogk, MD – Charles Bonnet Syndrome

Dean Lloyd, Esq – living with the Argus II

Gil Johnson – employment for seniors with aging eyes

We would like to extend our thanks to these eye care professionals, and to you, the reader, for helping to make this blog a success. Please subscribe to the blog and share it with your family, friends and doctors.

Susan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Lens Care If You Wear Contact Lenses and Use Cosmetics

9/23/14

In a continuation from his article on Proper Contact Lens Care, Mr. Ward, Director of the Emory Contact Lens Service, also offers tips if you wear contact lenses and use cosmetics. Several of these pointers apply even if you don’t wear contact lenses, but want to protect your eyes.

The Bullet List of Contact Lens Care For Users Of Eye Area Cosmetics

If possible look for eye makeup specifically labeled for use by contact lens wearers; use premium products.

Apply eye area cosmetics after inserting contact lenses (this will help prevent cosmetic contamination of lens surfaces from handling of cosmetics).

Remove lenses before removing makeup.

Remove makeup daily with mild soap and water; do not use oil or petroleum based make up removers; specifically, avoid moisturizing bar soap and an eye makeup remover that contains mineral oil and cocoa butter.

Choose water based makeup; avoid any oil based, or ‘waterproof’ eye area products (oils will travel across the skin and contaminate the tear film).

Avoid ‘lash-extending’ mascaras with artificial fibers, and apply mascara only to the end of lashes; do not apply mascara to the base of the eyelash or on the eyelid margin.

Do not apply oil-based moisturizers on the eyelids (oils can spread on the skin).

Do not apply any makeup to the eyelid margin (shelf), between the eyelashes and the eyeball.

Apply face powders sparingly; use pressed powder instead of loose powder; try to stay away from the eye area as much as possible; avoid frosted.

Choose liquid or gel eye shadows rather than powders.

Use caution with hair styling sprays. If possible, spray aerosols with eyes closed and step back out of the mist before opening the eyes. These gel/wax/lacquer type sprays can significantly coat your contact lenses.

Replace eye makeup at least every three months; do not share cosmetics.

And, please note that an automobile’s rear view mirror is not intended for makeup application while driving.

Michael A. Ward, MMSc, FAAO
Director, Emory Contact Lens Service
Emory University School of Medicine

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The Doctor Patient Relationship

More Amazing Guest Bloggers

Discovery Eye Foundation Blog’s First Three Months

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