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True Stories

• Vision Loss Hitting Home

• Did You Know

• Young Man with Leber's Optic Neuropathy

• What an Infant sees in the first months of Life

• Why Research is Important

• Searching for a Treatment for Juvenile Retinal Degeneration

• Going Blind and No Treatment Available

• 12 year-old Facing Vision Loss

• Letter from a Student with Usher's Syndrome

Number of Visitors Since 10/11/00 

Vision Loss Hitting Home

At the Fall Conference 2001, Lion President Dr. Larry Leguire was between guess speaker presentations when a noted LIONS member approached him in excitement.  "You have to help them he shouted!"  With wide eyes and a voice that most hearing impaired people could hear, the LIONS member went on to explain the situation - a boss's son had this lazy eye condition and the poor kid has to wear this patch over his good eye all day long!  Because the good eye was patched the poor kid couldn't see anything.  Other kids at school were picking on him because of the patch.  The parents were having a difficult time trying to get the kid to wear the patch.  The parents, kid and everyone else involved were at their wits end with all the stress this patching therapy was causing...Surely we, LIONS members and doctors and the Ohio LIONS Eye Research Foundation could do SOMETHING to help this family.

The kid in question has amblyopia, commonly known as lazy eye, which affects about 3 1/2% of children.  In the United States alone, there are about 120,000 new cases of amblyopia every year.  For the past 200 years, the main treatment for amblyopia is patching the good eye and forcing the child to use and strengthen the amblyopic eye.  Such treatment is not easy for any of the involved parties.  Research conducted at Columbus Children's Hospital by Dr. Leguire and colleagues, funded by the Ohio LIONS Eye Research Foundation, has recently shown that such patching treatment causes psychological harm to the child.  Unfortunately, treatment options are limited for children with amblyopia.  Things are changing, however.   Research funded by the Ohio LIONS Eye Research Foundation is being directed at alternative treatments for amblyopia involving the use of certain drugs to augment and speed-up recovery of vision with patching therapy.  Some day, rather than patching the child for, say, 6 months for the amblyopia, it might be possible to patch and medicate the child for only a few weeks in order to achieve the same positive outcome.

Unfortunately, hundreds of thousands of families every year have to suffer through patching "torture", as one child described it, for a lazy eye.  And, as discovered by the LIONS member that confronted Dr. Leguire recently, patching therapy is not as easy and straight forward as some might think.   If we all work together in future Candy Days and in other fundraisers, we, the Ohio LIONS, will and do make a difference.  Support the Ohio LIONS Eye Research Foundation TODAY.

Did You Know

Did you know that the Ohio LIONS Eye Research Foundation (OLERF) is celebrating its 50^th anniversary? The seeds for the foundation were planted by the Ohio LIONS Blind Welfare committee at the state convention in Akron in 1951. The "Ohio LIONS Eye Research committee" held its first meeting at the state convention in Cincinnati in 1952 where members were asked to support "research in the field of blinding diseases". The first donations were made by the Athens LIONS club ($100.00), Hollansburg LIONS club (amount unknown) and Middletown LIONS Club ($300.00). The research foundation was incorporated in 1957 and became a 501 3(c) nonprofit organization in 1958.

Did you know that one of the first research projects funded by the OLERF was to study the effects of oxygen on the development of Retrolental Fibroplasia (RLF) in premature infants? In the 1950s through the use of improved technology and supplemental oxygen, younger and younger premature infants were surviving; unfortunately, many of these infants were becoming blind. The first use of OLERF funds was to "purchase an apparatus for accurate instantaneous measurement of oxygen in the bassinets of premature children who are prone to develop retrolental fibroplasia." It was discovered that there was a relation between excessive oxygen use and the development of RLF in premature infants. By decreasing the amount of oxygen, the number of blind premature infants fell dramatically. Nowadays RLF is referred to as Retinopathy of Prematurely (ROP).

Did you know that in the early 1960s OLERF supported studies in the College of Optometry at Ohio State University? The studies were aimed at building a smaller "electronic tonometer" and to evaluate it for mass screening and detection of glaucoma. Today, tonometry is the standard for detecting elevated intraocular pressure in patients in basically eye doctor’s office in the country.

Did you know that in the early 1960s OLERF funded research at Case Western Reserve University into a new process called "ultrasound"? At the time it was started that this new technique could be used for detecting eye pathology in patients with cataracts and opaque corneas. Today, ultrasound is in standard practice and used worldwide in the assessment of patients with, you guessed it, cataracts and opaque corneas. Ultrasound lets us "see" beyond the cloudy lens as in the case of patients with cataracts as well as in patients with corneal opacities (e.g., metabolic disorders, corneal dystrophies, burns) and in patients with intraocular hemorrhages which prevent us from seeing directly into the eye with visible light.

Did you know that each year investigators from the seven research institutions in Ohio funded by the OLERF get together to discuss their progress in basic and applied research? Some of the topics included: the discovery of genes that cause optic nerve degenerations and corneal dystrophies; the influence of light on the progression of retinal degeneration; use of a drug to treat children with amblyopia (lazy eye); how to prevent river blindness; and, new treatments into diabetes and diabetic retinopathy. While some of these projects may run into a dead end, some of the research will lead to new treatments and cures in the future, much like the OLERF funded research of 40 years ago.

-Lion Larry Leguire

Medical/Scientific Chair, OLERF

Young Man with Leber's Optic Neuropathy

"Jeff" is a 20 year old college student and the editor of the college newspaper.  A few months ago he noticed that his vision was blurred and when he happened to close his left eye he noticed a large black hole in the vision of his right eye.  Within  just four months, the vision in the good right eye decreased to 20/200 - legal blindness, and the vision in his left eye was "counting fingers" - vision so bad that the eye doctor could no longer use the standard eye chart to measure his vision.  After numerous doctor visits and tests it was learned that Jeff has Leber's optic neuropathy.

Leber's optic neuropathy (atrophy) is a perplexing medical condition the hallmark of which is the sudden loss of vision due to optic atrophy - or wasting away of the optic nerve in each eye.  The optic nerve is the nerve that sends vision information from the eye to the visual centers of the brain.  Leber's optic neuropathy strikes mostly young men (about 85% of time) in their late teens and twenties.  It often affects one eye first and then affects the other eye.  It rarely affects only one eye.    A hall mark of the disease is/are a large central scotoma or blind spot right in the middle of one's vision.  Patients often have to look off to the side to see objects of interest.  Surprisingly, while more or less stable vision can be expected after the initial decline in vision, there have been a number of reports of spontaneous improvement in some patients even to near normal visual acuity (20/50).  Estimates of some recovery in vision range from 32 to 38% of patients. 

It is believed that the abnormal gene for Leber's optic neuropathy is carried through the female line of the family, via mitochondrial DNA.   There may also be skeletal, cardiac and movement problems associated with the disease.  The patient may also experience headaches and have pain on moving the eyes.   Sometimes color vision may also be affected while night vision (and the use of peripheral vision) is normal (except for the loss of central visual acuity).  At present (6/13/01), there is no accepted treatment or cure for Leber's optic neuropathy although some reports exist that a particular type of brain surgery (craniotomy with lysis of opticochiasmatic arachnoidal adhesions) may be beneficial. 

The Ohio LIONS Eye Research Foundation supports research into the causes and cures of conditions such as Leber's optic neuropathy (atrophy).   At the Medical College of Ohio, OLERF funded investigators are working on growing new optic nerves as well as on research directed at replacing the ganglion cells the make-up most of the optic nerve.  Hopefully, some day this research will lead to a treatment and even cure for Leber's optic neuropathy and other types of optic atrophy.

Until a treatment or cure is found for Leber's optic atrophy, Jeff will have to do the best that he can with the vision that he has after the disease runs it's course.  We would encourage Jeff to not let a vision loss interfere with college or his interest in journalism.  LIONS members will continue to work hard for you and support research into such blinding eye disease.   Some day, we'll find a cure for Leber's and for many of the other eye diseases that rob the sight of children, young adults and the elderly.

What An Infant Sees in the First Months of Life

In the past 25 years, much information has been uncovered through eye research about what an infant can see in the first year of life. Eye research allows us to address questions that are vital to our understanding of normal development of the eyes and visual system. In addition, eye research addresses what happens when problems develop with a child’s eye sight and also helps us to find new ways to treat children with eye problems.

When a infant is first born, the infant has very poor vision and if the infant were able to read an eye chart the infant would be termed legally blind; that is, the infant would not be able to see the big E on the eye chart. A new born infant’s visual acuity is much worse than 20/200. At birth, an infant sees mostly black and white and has little color vision. The new born infant also has trouble fixing and following objects with the eyes and may only temporarily look directly at objects. When a new born infant looks at your face he can see your dark eyes and perhaps your mouth, but does not see your nose.

During the first three months of life, the infant’s eyes and visual system develop rapidly. By about three months of age the infant can usually fixate and follow objects, can make "eye contact" and can see colors. At about three months of age the infant can start to see 3-D objects and the infant can see fainter, lower contrast objects such as your nose.

By six months of age the infant is actively exploring his or her world and surroundings. Although visual acuity is still rather poor, about 20/200, the infant can see most things in the immediate environment such as faces, toys and mobiles. Eye movements have developed such that the infant can now maintain fixation on objects of interest and can follow the object across the room. Depth perception is by now almost adult-like. Eye-hand coordination is improved and the infant can grab objects with his or her hands.

Unfortunately, not all infants develop normal vision in the first six months of life. Some infants, about 1 in 50, may develop a lazy eye, a condition doctors call amblyopia. If left untreated, lazy eye can cause a permanent loss of vision in the lazy eye and cause a loss of depth perception. Early signs of a lazy eye include an eye the constantly turns-in toward the nose or an eye that appears to wander.

The main causes of lazy eye are misaligned eyes, called strabismus, and unequal refractive error between the eyes, called anisometropia. When the eyes have unequal refractive errors one eye may be far-sighted and the other eye may be near-sighted. While misaligned eyes are common in infants during the first two months of life, by three months of life the infant’s eyes should be aligned and move together. If one eye turns in and stays in toward the nose for most of the time (esotropia) the infant could develop a lazy eye and the parents should have the infant examined by an eye doctor.

While misaligned eyes are easy to detect, a difference in refractive error is almost impossible to detect without an eye exam by the eye doctor. Often, such problems as a difference in refractive error are not detected until the child is much older, at which time it is much more difficult to treat and cure the lazy eye. This is one reason why every infant should have an eye exam by the age of six months, to make sure that the eyes are developing normally and that if a problem does exist that it can be treated and corrected early before additional problems develop.

Eye research is a slow and time consuming process. But with the help of the Ohio Lions Eye Research Foundation, more is being learned about how and how well normal infants see and also about new ways to treat and to prevent eye disease.  Through the efforts of every Lions member in Ohio, we are moving forward to the day when every infant will have a life with sight and a chance to see all the colors in the rainbow.

Without research there can be no treatment and without treatment there can be no cure. Research is the foundation on which the field of medicine is built. This is why the Ohio Lions Eye Research Foundation has made a commitment to the Ohio State University to fund a Research Lab as part of the Department of Ophthalmology’s research efforts.  With your help perhaps, someday, Shelly will be able to drive a car and to enjoy all those things that so many of us take for granted until we lose it.

In the study  at Columbus Children’s Hospital, a group of children with JRD, between 9 and 19 years of age, were given a capsule three times per day for 12 weeks. For six weeks the capsules contained the study drug and for six weeks the capsules contain "sugar". Vision was assessed with a battery of vision tests including the electroretinogram, visual acuity, color vision and reading speed.

The results of the study were recently published in the journal of the American Association for Pediatric Ophthalmology and Strabismus.  The researchers found the the study drug improved visual acuity by about one line on the visual acuity chart.  While the results of the study are encouraging and a good start, the researchers plan to study other drugs that are safe for children and that may further improve vision in children with JRD.

Going Blind with No Treatment Available

The Story of Paul

I first saw Paul for diagnostic testing when he was 32 yrs old and when he first started having trouble seeing at night.  His visual acuity was also not normal at 20/40 in both eyes.  The diagnostic tests included the electroretinogram (ERG) and electro-oculogram (EOG) - they confirmed our worst fears; Paul had a rod - cone degeneration called Retinitis Pigmentosa (RP).   The thing about RP is that there is no treatment available (except for the questionable use of Vitamin A Palmitate) and vision slowly but surely decreases with age.   The year was in 1984.

I recently saw Paul again for further testing in the Summer of 1999.  It was obvious that his vision had deteriorated significantly in the past 15 years - He was using a white cane.

Testing revealed that Paul only had light projection remaining - he could tell the general location of where a light was coming from but couldn't make-out the form of the lighted object.  He had no color vision and couldn't see me standing in front of him.  He was being evaluated for a "Blind Vendors Program."

I had a long conversation with Paul about the last 15 years of his life.  It seems that Paul not only lost his sight but because of his failing vision he also lost his wife, job, house and, most importantly, he lost his driver's license and independence.  He told me that his failing vision was too much for his wife to bare, although they still have an amicable relationship.   They have two children.   As his vision failed he couldn't keep - up with his work at an electronics parts store and so the owner of the small business had to "let him go." The loss of the job caused him to fall behind in his mortgage payments and so he lost his house.  He said that he reached bottom about 3 years ago.

Paul has a strong constitution though and decided that he wasn't going to let this blindness thing run his life - he was going to do the best he can with what he has.  Paul started to socialize again and remarried recently.  He signed - up for a training program and was about to embark on a new career as a blind vendor.  Paul also said that he hoped to purchase the small house he and his new wife are currently renting.

The talk I had with Paul made me realize, more than ever, the importance of the work that the Ohio LIONS Eye Research Foundation is doing throughout Ohio.  Finding a cure for blinding eye disease doesn't just happen, it takes years and years of research, clinical testing and sometimes plain luck.  And research isn't cheap.  As we more into the next millennium we have a choice, much like the choice that Paul had when he was at the bottom.  We can let adversity control our lives or we can control our own destiny.  Support the Ohio LIONS Eye Research Foundation and help control your and your children's future - your sight might depend on it.

12 year-old Facing Vision Loss

I recently received a letter from a mother of a child that was recently diagnosed with Retinitis Pigmentosa (RP).  The mother wrote that her son, "Sam", was having a lot of problems dealing with the eye problems that he has and worried about the future.  "He cries himself to sleep at night", the mother wrote.  "Maybe it would help if he had someone his own age to talk to who had a similar problem?"

Sam has a retinal degeneration called RP, and there is no treatment available.  Early symptoms include problems seeing at night or under dim light levels, loss of side vision resulting in tunnel vision and eventually decreased central, reading vision.  In general, the earlier the age of the diagnosis, the faster the progression of the disease.

Can you imagine, for a moment, being 12 years old and trying to play sports when you can't see the other players off to the side?   Or, you're at the age when your trying to establish independence from your parents and, yet, you have to rely on them more and more just to get around when the sun sets?   Or, you want to be a fireman, or airline pilot or ... but your eye sight continues to get worse?

The mother's letter strikes a cord in all of us who are dedicated  to the study and treatment of blinding eye disease.  There is no greater motivation, and yet frustration, than to hear such stories over and over again.  One day there will be a cure for such things as RP. Whether that day comes soon enough to help Sam depends on all the LIONS members throughout the World.  As the LIONS are THE Knights for Sight as Helen Keller challenged us to be in 1925, 75 years ago.

The next time you're participating in the LIONS White Cane Sale, or participating in a LIONS Club activity to raise money for the Ohio LIONS Eye Research Foundation, please think of Sam - That little boy who cries himself to sleep each night and is afraid of what the future might hold for him.  We think that Sam would feel better just knowing that there are hundreds of thousands of LIONS members throughout the World, thinking and praying for him and working for a cure.   Sam, we won't let you down.

Letter from a Student with Usher's Syndrome

"I was born deaf.  Also, I have a problem with my eyes called retinitis pigmentosa.  I am afraid to become blind.   I am not blind now - I can see in the day but can't see as well in the dark.   My new friends and old friends know that I have bad eyes.  I only cry when I can't see in the dark.  I am afraid I might fall or run into something.  I don't want to become blind.  I pray that God will bless me and I hope he will heal my eyes.

Many people help me.  my friends hold my arm when I go to the movies because I can't see in the dark.  In class, I can't see the board.  I can see close up but not far away.  I can read the overhead projector.  I can't see blue print on paper.  I can see black better.  I can't see small letters, but large letters are easier to see.  I like to thank my teachers for helping me and thank my friends for copying assignments for me.  I don't know what I would do without the help of my friends and teachers...

My friends help me when we go to the restaurant.  They hold my arm.  The restaurants are dim.  I can't read the menu so my friends tell me what it says and give my order to the waitress.

I have problems at school too.  The halls and stairs at school are dim.  Sometimes I trip.  I am afraid I will trip and hurt my ankle.  I follow my friends because they take care of me.  Some people tease and joke with me because I bump into things.  Some people say "ARE YOU BLIND?"  I say no, I have problem with my eyes.  They hurt my feelings."

[Note: Usher's syndrome is the leading cause of deaf-blindness in he USA.  Usher's syndrome is an autosomal recessive inherited disease characterized by a sensori-neural hearing loss present at birth and the development of retinitis pigmentosa (RP) in the first or second decade of life.  RP leads to legal blindness through the loss of visual field and loss of visual acuity to the 20/200 or worse level.  Usher's syndrome affects about 1 in 33,000 individuals in the USA.  However, in the hearing impaired/deaf population, about 2% have Usher's syndrome.  There is no treatment currently available for Usher's syndrome.]

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W. R. Bryan Diabetic Eye Disease Research Fund

2008 OLERF Annual Report (PDF file)

2009 OLERF Annual Report (PDF file)