She looks down through the lighted magnifying lamp straining to see her fingertips and the ends of her
knitting needles. The slim white fingers of her left hand press the loops of yarn, forcing them open while the fingers of her right hand deftly guide the needles through the
loop. She senses that I'm watching her and looks up at me through unfocused eyes. "I can't really see them," she says of the needle tips. "I'm doing
it more by feel than sight."Her knitting is more a release of anxiety than anything else. She knits small hand towels, takes them apart and re-knits them all over
again. It is one of the few things she can still do unaided. "It's hard to believe that less than a year ago I was reading a book a day and going to bingo. Now
I can't even write a check," she says. Tears start at the corners of her reddened eyes.
Her eyes don't look like they used to. Now they are unfocused and
vague. The gleam and intensity from her gaze is gone. I know what these eyes looked like. They are my mother's eyes, and I've looked into them for years. But now,
80-year-old Evelyn Behrendsen's whole world has changed. A disease called macular degeneration has robbed her of her central vision and left her nearly blind -- and
all this has happened in less than a year.
Macular degeneration is a thief that steals the central vision of the eye - sometimes slowly, sometimes quickly, but the effects
are permanent with little hope for saving what vision a person has and no hope of ever regaining the sight they once had. Macular degeneration affects the macular area of the
retina, the area that controls our central vision. As we age, the cells in this sensitive area of the retina can begin to deteriorate. That is why this disease has been
called age related macular degeneration, or AMD.
The retina portion of the eye can be compared to the film in a camera. Good film-good pictures. Bad
film-bad pictures. The human eye is one of the most complex organs in the human body. In fact, to make a comparison between our eyes and that simple electrical pump we call our
heart, is like comparing the space shuttle to an old Schwinn bicycle.
Our eyes have over a billion highly specialized circuits that interact with the optic nerve and the
brain centers to interpret and transmit data that is then transformed into our sensory perception of sight. Most of this wiring is found in the retina. The retina is a
photosensitive array of cells that line the back of the eye. These cells transform light into electrical signals. In the dead center of the retina is the most concentrated
array of cells, which enable us to see color and detailed vision. This bulls eye area is known as the macula.
Of the over 50 million people affected by AMD
worldwide, the vast majority of them have the "dry" form. Many of us reading this article probably already have "dry" macular degeneration. This
is the slow form of the disease in which vision gradually decreases as the retina wears thin and abnormal deposits, called drusen, start to appear. With the "dry" form
of the disease the deterioration of a person's vision is slow and insidious and may barely be noticed. About 5 million people, or 10 percent of the cases, suffer
from the more severe "wet" form of AMD. Wet macular is a thief of a disease that rapidly steals a person's vision from the inside out, leaving a once functioning and
independent person nearly blind and wholly dependent upon others. In "wet" AMD, new blood vessels form behind the retina, then leak into the macula and
start to destroy it. These abnormal blood vessels spread across the back of the eye obscuring one's vision.
These leaking blood vessels create a blind spot directly in front
of you - a blind spot that cannot be removed from the center of your vision. You cannot see through it, but you can see around it. You live in a world of peripheral
vision.
To those of us with somewhat normal vision, we find it almost beyond comprehension when those stricken with AMD describe their symptoms. They will tell you
that, at first, straight lines appear wavy, then fine details fade and it becomes hard to read or focus on just one word. When looking at people's faces, they can no longer see
the details of the face. Instead, they see only blobs of purple or brown. Buildings seem slanted, and cars go down the road with their tires sticking out at an angle and
their tops all scrunched down. Victims of this disease quickly lose the ability to read, write or drive, and usually progress to severe vision loss within two years.
Those
diagnosed with the "dry" form of AMD should be checked often, because should one or both eyes turn to the "wet" stage, then the destruction of the blood cells in
the retina accelerates and a person can sustain severe vision loss in a matter of weeks or months. So it was with my mother.
Last year, after having cataracts removed, she was
told that she had "macular" in her left eye. It quickly went from dry to wet, and she lost most of her central vision in that eye. Even at that point she could
still see and function nearly as she had before.
"The good eye helps me see some of the central vision," she would say, "but faces still sometimes look
purple." Then two months later, her right eye began to worsen. She started to panic, fearing complete loss of her central vision in both eyes. We rushed her to
the Emory University Eye Center in Atlanta, Georgia, hoping to find something that would cure her disease and salvage some of her remaining eyesight. It was there that we
learned the good news and bad news about this debilitating disease that is claimed to be reaching epidemic proportions.
Among the baby boomers and the elderly, age related macular
degeneration has become the leading cause of severe vision loss worldwide. Dr. Thomas Aaberg Jr. of the Emory Eye Clinic cites some reasons and statistics. "We are an
aging population with longer life expectancies," he notes, "and in some cases we are actually outliving our eyes natural ability to function properly." When asked
to justify the term epidemic, he cites some incredible numbers. Over two million new cases of AMD are diagnosed each year in the United States alone. This is a staggering
figure in itself, but we need to triple that number for a worldwide estimate of those afflicted with this disease.
When we asked Dr. Aaberg Jr. what brings this disease on, we were
told that genetics play a large role in its disposition, but cigarette smoking and cataract removal also seem to be contributing factors in many case histories. The question in
the forefront of our minds was, will her eyesight ever be regained. Sadly, we were told no - never. "All we are doing is fighting a stalling battle," the doctor
said, "and the treatments available don't work in all cases.
The only ray of hope for my mother was that there were even treatments at all, but at a success rate of only 30
percent, the numbers didn't instill great optimism. As we sat in the doctor's office, he explained the different type of treatments. My mother looked down at the floor,
depression etched across her face, anger, frustration, resentment and self-pity having already consumed her. Her days have been spent in anguish and long periods of
crying. She worries constantly and cannot sleep. Unable to take care of herself, she has been taken from her home and is now dependent on her children - something she loathes
more than anything. It is a matter of losing her independence, she says through her tears. Yet, she listened with rapt attention to the doctor as he explained what might
be her last hope of saving the remainder of her vision. She is not alone in her plight against the loss of her sight, but this is of little consolation to her.
Ed
Aleksandrovich, founder of the Macular Degeneration Foundation, in San Jose, California, calls AMD a raging epidemic, stating that one case of AMD occurs every three minutes. He
also notes that one in three people over the age of seventy-five are afflicted, and each year, over 200,000 people will lose all their central vision in one, or both of their
eyes. Of the world's population, it is estimated that the disease affects 50 to 70 million people.
Up until recently, the thousands and thousands of older Americans suffering
from this creeping form of blindness had little or no hope. This is not the case today. Advancements have been made with pharmaceutical drugs and nutritional
supplements. The FDA has approved a new treatment involving the use of cold lasers and a drug called Visudyne. Dr. Neil Bressler of John Hopkins University helped test
Visudyne, and he stresses that the treatment "is not a cure, and it's not for everybody, but it does reduce the chance of further vision loss."
This is the
drug used in the treatment for AMD by Dr. Aaberg Jr. at the Emory University Eye Center in Atlanta, Georgia. Aaberg, his fellow ophthalmologists, and the technicians at Emory
are among the leaders in the fight against macular degeneration. Aaberg notes that "Emory has for some time acted as a combined center for research and clinical
testing." He estimates that 20 per cent of the patients that are treated at the Emory Eye Center suffer from some form of macular degeneration. Aaberg is heading a
number of studies and treatments for the disease. He is presently involved in the Photodynamic Therapy, better known as PDT. PDT is used as a treatment for the
"classic" form of "wet" macular. In this treatment the Visudyne drug is injected into the patients arm. When the drug reaches the abnormal blood
vessels of the retina, shining a cool laser into the area activates it. The infrared laser causes the blood vessels to clot, thus stopping the leakage into the macula. It
is a wound healing type of process. While this therapy will not restore vision and has not been shown to improve vision, it is the doctors hope that it will stem the tide of
destruction of the macula cell area and thus help the patients retain what precious sight they have left.
Dr. Martin, of the Emory University Eye Center, is leading a treatment
program using intravitreal injections, in which a drug implant is put into the membrane of the eye. The implanted drug reacts against a chemical in the eye that generates
abnormal blood vessel growth.
Radiation therapy is also being tested on "wet" macular to see if doses of low radiation can stop the process of destruction. Also,
surgery and vitamin studies, such as the effects of anti-oxidants and zinc on slowing the progression of the disease, are only a few of the alternative treatment programs available at
Emory.
While no one is exactly sure what causes AMD, Aaberg Jr. believes that the underlying cause may be some kind of damage to the RPE, or to the Bruch's (pronounced Brook's)
membrane. When looking at the anatomy of the retina, the RPE is a layer of nourishing cells that flow beneath the retina, ferrying in oxygen and hauling out the waste and debris
the retina cells are flushing. Below it runs Bruch's membrane, a thin filter separating the retina from the Choroid blood vessels below. As we age, our Bruch's membrane
wears thin in spots, allowing blood to seep through it, compromising the RPE cells. Abnormal blood cells begin to dump into the macula, causing the loss of one's central
vision. The problem then becomes how to stop the proliferation of the abnormal blood cells. Dr. Aaberg Jr. believes some future possible treatments may include
transplanting cells to the retina, or to the RPE, and even transplanting cells to thicken the Bruch's membrane.
Ed Aleksandrovich, founder of The Macular Degeneration Foundation,
agrees with Dr.Aaberg Jr. from Emory, in believing that the Bruch's membrane is the key to curing the disorder. Aleksandrovich speaks from personal experience with the
disease. "I had the 'dry' form with deposits of drusen," he told me, "and my vision got as low as 2400/00. I was nearly totally blind." He chose
a treatment called micro current stimulation, which is electrical energy on a low current. Now he can see and has no crooked lines. He has 70 per cent better acuity, and
can read text in the 20/60 range. Recent documentation from scientific papers suggests that this treatment may work on the "classic" type of wet macular also.
"Macular degeneration is a condition," Aleksandrovich explains. "It is a pathological problem resulting from a mutation in the ABCR gene, and to call it age
related is a bit of a misnomer, because there are people of all ages with this disorder -even children." He also makes note of the fact that AMD is twice as prevalent in
women as it is in men. Millions of dollars in grant money are being spent, according to Aleksandrovich, researching the relationship between estrogen therapy and its beneficial
effects at staving off and reducing the risk of AMD. The theory being that after menopause the flow of estrogen stops and the lack of this important female hormone may somehow
aid in the deterioration of the retinal cells. Studies are currently underway at Duke University and the University of California at Davis.
Aleksandrovich also feels that the
Russians might be more advanced in the treatment of eye diseases than we are in America. He makes reference to the work being done at Rostov University in the field of
ophthalmology and neurophysiology, but he is quick to add that the United States is not without some fine specialists in the field also. He speaks highly of Dr. Robert D'Amato,
claiming that he is "one of the top researchers on the "wet" form of macular degeneration." Dr. D'Amato, M.D., Ph.D., Associate professor/researcher and
scientist at Harvard University, is one of the few doctors working purely in scientific medical research. Dr. D'Amato is a member of the team of Harvard researchers called the
"Cancer Warriors" in the field of "Angiogenesis Inhibitors." Dr. D'Amato believes that the process of inhibiting the creation of spurious blood vessels in a
cancer tumor may also be an effective means for inhibiting the formation and spread of leaking blood vessels that are the curse of "wet" macular disorders. He has also
published a book that contains the latest scientific information on the disease.
Regarding research into AMD, Aleksandrovich points out that not nearly enough is being done, stating
that only 5 to 10 per cent of the entire research budget of the National Eye Institute has been allocated to studies on macular degeneration. I asked Aleksandrovich why there
has been so little interest and funding by both the federal government and private institutions into the disease which is the leading cause of blindness in the western world.
"It's really very simple," he said. "We live in a shock affect world. People die from cancer. People die from AIDS. These diseases get the most
attention and the most funding simply because people die from them. When you get macular degeneration, you don't die, but your quality of life can be severely diminished and
your independence taken from you."
Interest in the disease is rising, no doubt because of the profound number of people that it is affecting. This can easily be
recognized by the fact that the Macular Degeneration Foundation has the fourth largest medical website on the Internet.
"There is still much work to be done to defeat this
disease, and we need all the help we can get," Aleksandrovich says, with the determined voice of a man who survived and stepped out of the darkness. Now he dedicates his
life to help others do the same, others like Evelyn Behrendsen who wonder why, "we can put men on the moon and little remote cars on Mars, but we can't even spend enough time,
money and effort to cure the diseases of the eye."
All we, Evelyn's family, can do is to surround her with bright light, which seems to aid her in seeing, but the light does
nothing to pull her out of the deep well of depression that the loss of her vision has pushed her into. She cries daily and asks herself in torment, "what have I done to
deserve this? Why has God done this to me?" The doctors say that she has simply had too many birthdays, but this sounds like so much nonsense to someone who saw the
world clearly only a year ago and now must stand with a lighted magnifying glass to see the "Cook" button on a microwave oven. Many people have been known to have
nervous breakdowns over the loss of their sight, and this is a constant concern for us, her family. She has had bad reactions to two different antidepressants and needed to be
hospitalized twice. AMD has taken a heavy toll on this once vibrant women. Up until two years ago her medicine cabinet included only aspirin, and her mind was sharper than
that of a teenage girl. Now she forgets and misplaces things and finds sleep impossible. Each day she struggles with her mental state and her physical well being.
And each day, both she and those of us who love her, find it difficult, if not impossible, to deal with the sickening, powerless feeling of being unable to stop the inevitable.
If
you have any questions regarding treatment programs, or would like to make donations or gifts to the Emory University Eye Clinic, you can reach them at 404-778-5522. If you have
questions, or would like to make donations to the
