World KC Day

World KC Day is November 10th! 

World KC Day is an awareness day to help bring a spotlight to keratoconus and honor those that live and cope with keratoconus every day.

Keratoconus, often abbreviated as “KC”, is a non-inflammatory eye condition in which the normally round dome-shaped cornea progressively thins causing a cone-like bulge to develop. This results in significant visual impairment.

Do you or someone you know have KC?

Here are some ways you can join the National Keratoconus Foundation and thousands around the world in spreading the word about keratoconus:

⇒ Join the NKCF Twibbon campaign
⇒ Add yourself to the World KC Map
⇒ Post about keratoconus and use #worldkcday as your hashtag
⇒ For more information about World KC Day visit worldkcday.com

The National Keratoconus Foundation is a program of the
Gavin Herbert Eye Institute at the University of California, Irvine.

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Breathing, Patience and Keratoconus

7/1/14

Besides hearing from eye care professionals and Discovery Eye Foundation staff, we also think it is important to hear from people with sight threatening eye diseases such as age-related macular degeneration, keratoconus, retinitis pigmentosa, etc. They can share their experiences with others that are newly diagnosed with eye disease, while providing insights to family members, friends and caregivers. What follows is the first of these occasional posts focusing on the experiences and insights gained from vision loss.

“The expression on my optometrist’s face was as if he was giving me a cancer sentence,” Jeanette Hasseman remembers. “I had never heard of keratoconus, but he told me it was an incurable vision disability. He said he was aware of some evolving technology, but he wanted to give me some time to absorb and research the disease.
Jeanette Hasseman - keratoconus
“When I went back three months later, he told me a about a cross-linking study that was going on not-too-far from here, but I hadn’t fully absorbed all the information I was reading yet,” she recalls. I did not understand — even though it was plainly stated in the information I was looking at — that once you lose some vision, you don’t get it back.

“I kept thinking, ‘OK, this certainly can be fixed,” so instead of getting cross-linking in July, I waited until December. I regret not acting on my doctor’s suggestion of getting in the study in July, because I lost a tremendous amount of vision by December.”

Hasseman was tested and qualified for the clinical trial in December and had epi-on cross-linking in both eyes in January 2013. “The topography scans show the KC progression has been halted,” she says. “I rejoice in that.”

While her vision seemed better shortly after the procedures, she was diagnosed one week after crosslinking with a “gouge” (4 mm corneal abrasion) in her left cornea that resulted in severe hazing. While the severity of the corneal hazing has decreased in the past year, she is waiting to find out if it is permanent. If so, she may need to have a corneal transplant at some point to restore any visual acuity.

A registered nurse, Hasseman finished her BSN degree two years ago at age 54 — just months before she was diagnosed with KC. The native Ohioan has since stopped working as a nurse, and more recently, she had to give up teaching and doing tatting — lace-making — a hobby she had enjoyed for decades.

Hasseman found the National Keratoconus Foundation (NKCF) when she first Googled “kerotoconus.” “KC-Link has been a great blessing,” she says. “I’ve downloaded information; I signed up for KC-Link and asked questions of Catherine [Warren, director of NKCF] and the moderating doctors. I found great support for my own spirit, as well as information on the latest technologies.

“When people ask questions on KC-Link, if I can relate, I answer. Just the other day, someone who was just diagnosed asked, ‘Well, what should I do?’ I wrote: ‘First thing is: Breathe. Second thing is: Ask for information from your eye doctor and ask who is the best corneal specialist in your area who is really good for keratoconus. Most of all: Be patient.’

“It’s really hard to lose your vision. Even in your own heart, you can feel isolated. KC-Link gives you a body of other people who totally understand what you’re thinking, what you’re feeling, what frustrates you. There is so much advice you can get on KC-Link regarding contacts, how to keep eyes moist, how to handle low-light driving, what type of e-reader works best for people with keratoconus — you cannot exhaust the information that is shared; you cannot exhaust the different emotions that are shared.”

Jeanette HassemanJeanette Hasseman
Keratoconus Advocate

End of the Day Syndrome

4/2/14

“Dr. S., my eyes are red and burning at the end of my work day.”

“Patient, what sort of work do you do?  Tell me something about your work conditions.”

“I am a computer graphics artist.  I sit and stare at my twenty-seven inch HD screen for hours on end gently adjusting the composition of each pixel.  My studio is air-conditioned but not humidified, so after some hours of work, I feel dry as a bone.”

“One more question…can you cry tears?  Say, when you peel and slice an onion?”

Rule of 20 - blinking

The need to blink

Blinking is a complex function of the eyelids that when completed results in a clean, refreshed, re-wetted corneal surface.  The tears that are washed across the outside of the eye with each blink bring oxygen and other nutrients to the outer cell layer aiding in the rebuilding and revitalizing of the surface tissue.

Blinking is characterized by a full sweep of the upper lid over the eye to meet the lower lid.  The completion of this motion is performed gently without squeezing.  And, to be effective full eye closure needs to be repeated fairly often.  Blink rates vary according to investigators but most sources report an average of between six and ten full blinks per minute under normal viewing circumstances.

The anti-blink problem of our generation

In olden times – say the years between 1750-1950 – the most aggravating problem to the ocular surface was a good book or intense study.  The reader would concern himself with the text at hand and slowly his eyes would dry until a “rest break” was necessary.

Environmental or vocational changes to our lifestyle over the generations have promoted reduced blink rates.  Most recently in this negatively developmental progression is the effect of the television screen, the CRT, the LED screen, the handheld and pocket computer on the blink rate.  It appears that as attention level increases, blinking suffers.  First the eyes close less, then incompletely, and finally rarely only when surface dryness drives the individual to desperate measures.  He must blink or (so he feels) his eyes will pop out of their sockets.

Adding insult to injury increasingly over the decades is air conditioning – both heating and cooling – when not humidified.  Staring at console screens in dry environs speeds the desiccation of the cornea and results in discomfort.

The surface of the eye is a biological system.  Living systems require some degree of moisture.  If the cells of the eye – or any biological surface — are permitted to dry out, they will die.  Dead corneal cells fall off the cornea and float in the tears on the surface of the eye until washed away with a blink.  Until the surface is cleaned the dead cells are considered by the eye to be foreign bodies with the consequent irritation and induced reflex to blink.

When cells die and fall off, the underlying nerve endings send pain signals to the nervous system.  The sensation can be felt as pain, burning, or mere irritation or itching depending upon the severity of cell loss.

How to handle environmentally induced dry eye

After the ocular surface is dry most treatments will seem to make matters worse:  to cause burning and stinging, perhaps, even more than the dry eye itself.  Any tear substitute, any amount of blinking will be irritating at first. But, that is really all that can be done at this stage:  wetting and blinking.

Prevention

As in many conditions, the best treatment, in fact a cure, for recurrent environmentally induced dry eye is prevention.  For the eye that has a naturally flowing tear supply, the act of blinking is the surest prevention to stinging and burning after a day’s work at the computer.  Additionally, many sources recommend using the ‘rule of 20’:  after each twenty minutes of work, look up from the text or away from the screen; blink and refocus on the page twenty times.  This repetitive exercise simultaneously re-wets the eye and relaxes the focusing mechanism of the eye.

The result is relaxed and comfortable eyes that can continue to provide important and high quality information for longer hours of work.

Bezalel-SchendowichBezalel Schendowich, OD
Chairperson and Education Coordinator, JOS
Fellow, IACLE
Member, Medical Advisory Board NKCF
Sha’are Zedek Medical Center, Jerusalem, ISRAEL