Volume 9, Number 3
Fall, 2000
Glaucoma Research: What Patients Need To
Know
New Glaucoma Service Research Director
Dr. William Steinmann spoke with the Foundation's Patient Support
Group on Sunday, September 24, on the topic "Glaucoma Research:
What Patients Need to Know."
Patient, Researcher, Doctor
Dr. Steinmann prefaced his remarks by noting
his unusually broad perspective on glaucoma research. First, he
himself is a doctor - not a glaucoma doctor - but an internist.
Second, he is an expert in designing and carrying out research,
including research on glaucoma diagnosis and treatment. And third,
and most fascinating to the group of glaucoma patients with whom
he was speaking, he himself has glaucoma, having been diagnosed
three years ago with the condition, which, he explained to the
group, had "stolen" the sight of his left eye.
He told the story of entering the first attraction
when he was visiting Disneyland with his 5-year-old daughter.
The pilocarpine eye drops he was taking for his glaucoma had made
his pupils so small that he couldn’t see a thing! This unexpected
side effect from his glaucoma medication is but one of the many
problems patients experience from taking eye drops.
As a researcher, he wants to address these and
the countless other difficulties associated with the disease in
a comprehensive glaucoma research program carried out at Wills
Eye Hospital. For, he explained, as much as we have learned about
glaucoma, especially in the last 20 years or so, the evidence
on which doctors base their diagnosis and treatment of the disease
is still disappointingly little.
Glaucoma: Unanswered Questions
For over 100 years, Dr. Steinmann noted, ophthalmologists
thought they knew what glaucoma was. Someone had glaucoma if their
eye pressure was over 21 mm Hg, and the obvious way to treat it
was to get their pressure down below 21 mm Hg.
Thanks to the efforts of researchers and in
many instances clinicians who actually studied the matter, we
now know that people with pressures lower than 21 mm Hg can have
glaucoma and that people with higher pressures do not necessarily
have glaucoma. We also know that lowering pressure to just below
21 mm Hg may not be good enough. Even greater pressure reduction
may be necessary.
No one knows how many patients' health and well-being
was compromised by taking glaucoma medications, even though they
did not have glaucoma. And how many people who had glaucoma, but
at lower pressures, were not treated because doctors did not think
they had glaucoma, but in fact they did.
As crucial as it was to discover that the presence
or absence of glaucoma cannot be determined simply by measuring
intraocular pressure, this information represents just the tip
of the iceberg.
For example, we still do not know what causes
the most common form of glaucoma -- primary open-angle glaucoma.
Unlike in some forms of glaucoma in which it is clear that something
is clogging the angle or drain of the eye, here the drain appears
to be open. Yet the pressure of the fluid is still high enough
to damage nerve cells in the optic nerve, causing loss of vision.
Other essential questions remain unanswered:
- What makes the vision of people with glaucoma deteriorate?
Is it something other than pressure?
- What predicts for poor surgical or medical results?
- What are the costs and benefits of
- administering visual field examinations?
- measuring intraocular pressure?
- taking photographs of the optic disc?
- surgical compared to medicinal treatments?
- Why might a patient complain about deteriorating vision even
though her acuity and visual field seem to be good?
- What makes a medicine good for a particular person?
- Exactly how does glaucoma affect people's ability to function
in everyday life?
- How can we be sure that the devices used to measure intraocular
pressure measure pressure accurately?
- How often should visual field tests be done and what do the
results really mean?
- How do we test for glaucoma in the general population? Now
we measure pressure, consider family history, and look at optic
nerve. Is this appropriate? We really don’t know. How many cases
of glaucoma get missed?
- How much should a particular patient’s pressure be lowered?
It is research, such as the research being conducted
at Wills, explained Dr. Steinmann, that will answer these questions.
Glaucoma Research at Wills
His intention as Research Director for the Wills
Glaucoma Service, Dr. Steinmann explained, is to take the opportunity
afforded by the unmatched quantity and quality of patient records
and visits available here to set the standard for glaucoma research
everywhere. “Wills with its great history of glaucoma practices
and great clinicians should also be where the research is conducted.
The new evidence we uncover here will come to define the standard
of care provided not only by our glaucoma specialists to our patients
but by glaucoma physicians to their patients everywhere.”
With this in mind, he outlined the major areas
of research that will be the focus of the Glaucoma Research Institute
at Wills Eye Hospital:
- surgical treatments
- medical treatments
- risk factors
- diagnostic screening - tests
- quality of life and disability associated with glaucoma
In addition he spoke of creating a “genetic library,” which would
enable investigators worldwide to test theories about the genetics
of glaucoma.
Finally, he outlined his plan to involve a network
of physicians in Wills research as well as develop methods of
ensuring that what we find here is disseminated widely in order
to help glaucoma patients everywhere.
“The answers can be found,” he asserted. “We
must accept nothing less than the most valid answers arrived at
by the most exacting methods of clinical research.”
Managing Pediatric Glaucoma
 Dr.
Richard Wilson is shown examining the retina and optic nerve of
a young child with glaucoma. Wills has become an international
center for the treatment of pediatric glaucomas with referrals
from as far away as Bulgaria and Israel. The developmental glaucomas
require a specialized approach. Patients need extra time for relationship-building
and examination. Many young patients require sedation or anesthesia
to obtain a comprehensive evaluation. Medical therapy is often
employed if needed after surgery instead of before because of
the increased risk of side effects and the difficulty of administering
medications in this age group. The most common surgeries used
with congenital and infantile glaucoma are designed to unblock
specific devopmental obstructions to ocular drainage and are not
used in the older population. With the specialized care available
at Wills Eye Hospital, the prognosis for usable vision is surprisingly
good.
Photo by Jamie Nicholl.
Glaucoma Patient Support Group 2000-2001
All programs are on Sundays
from 1:30 PM to 3:00 PM in the Wills Eye Hospital auditorium on
the first floor of the Hospital.
Please always call the Foundation
office, 215-928-3487, during the week before the scheduled sessions
to confirm that they will still be taking place.
Click
here for the 2000-2001 Schedule.
The Three Secrets To Good Health: Listening
To Your Inner Ear, Living Like A Neanderthal, And Learning
by George L. Spaeth, MD
Why People
Get Sick
In the simplest terms, people get sick for two
reasons. The first relates to a person’s genes. Some people have
genes that tend to keep them healthy, and others have genes that
predispose to illness. The second reason is that something outside
ourselves damages us -- a dose of influenza virus from a person
who coughs at us, or an automobile running a red light and smashing
us up.
We cannot directly control many of the things
in the environment, such as the quality of the air we breathe
and the water we drink. However, the single greatest factor relating
to whether we are sick or well is how we take care of ourselves.
How we do that is definitely a “something” that happens to us!
“I’m Just Like That!”
One frequently hears, “Oh, I’m just like that!”
meaning, for example, “I’m overweight because that’s the way I
am,” or “I don’t exercise because I’m just not that kind of person.”
Or, “I get angry and hit people because I just can’t help myself.”
And while, obviously, every person is different from every other
person, and some seem to eat everything and not gain weight, maintain
good muscle tone with minimal exercise, or always seem serene,
these and most other characteristics can be affected by the way
we live.
Saying, “I’m just like that” is almost always
our own personal excuse for not doing what’s necessary to make
the change. Because, while it is true that our genes largely determine
the nature of the building materials that form us, those genes,
those building materials, are affected by the environment, which
includes how we live.
Listening to Our Inner Ear
The first secret to good health is listening
to one’s inner ear, that part of the body that determines our
sense of balance. The inner ear tells us whether we’re up or down
or sideways, and how every one of our motions relates to every
one of our other motions. It’s amazing to consider that when we
walk our eyes move up and down, but the world does not seem to
move. Our eyes readjust to the changes in a miraculous way we
don’t even notice.
People with Meniere’s disease, or other diseases
of the inner ear, lose this ability and find a simple task such
as walking so disagreeable that it may cause them uncontrollable
vomiting. When a person with a disease of the inner ear turns
his head to look to the side he may fall over in a fit of dizziness.
The inner ear is concerned with balance in the
most literal sense. But I mean more than just that physiologic
balance when I say “listening to the inner ear.”
I first heard the phrase used by Dr. Betsy Datner
talking to a group of young physicians, advising them how to maintain
balance in their lives. She was suggesting that most of us are
partially aware of when our lives are getting out of balance,
but we often don’t heed the warning signs. We don’t listen.
We see ourselves getting overweight and feeling
less healthy, but we ignore it. We think we may have lost a little
bit of vision, and we wonder if our glaucoma or some other condition
is getting worse, but we don’t listen to that inner ear which
is present in all of us but utilized to dramatically different
degrees.
The Doctor Knows Best?
The medical profession bears a heavy responsibility
for teaching people to be skeptical about what their inner ear
is telling them. “The doctor knows best” is a tragic example of
the big lie theory: tell a lie sufficiently vigorously for a sufficiently
long time and people will come to believe it.
True, physicians and healers have always known
more about certain things than those not involved in the healing
arts. But only patients know what they want, what they feel, and
how well they are functioning. They know these things by listening
to their inner ear.
Virtually every day I’m seeing patients one
or more of them says to me, “I think I’m getting worse, but my
doctor tells me I’m doing fine.” When the patient says he or she
is doing worse, he or she is doing worse. That deterioration may
be related to anxiety, unrealistic evaluation of what’s happening,
or deterioration of biological function.
When the physician does not see a biological
cause for the patient’s perceived deterioration, he or she frequently
writes it off as of no concern. However, physicians never do truly
comprehensive examinations, and can never detect all biological
changes that are occurring. The most that a physician can do is
use appropriate tests knowledgeably, interpret them carefully,
and then say to the patient something like, “I can’t find any
cause to explain why you’re feeling worse. The likelihood is that
it can’t be very serious. If it gets more troublesome, make sure
you get back in touch with me right away. Otherwise, let’s just
watch it and see whether you get better or worse in the near future.”
Live Like a Neanderthal!
Genes are turned on or off by the way we live.
Genes are said to be “upregulated” or “downregulated.” A vast
amount of research is presently under way to determine what factors
upregulate and downregulate genes. Additionally, genes change
with time. Mutations occur. Genes are not always passed on to
succeeding generations unaltered. Indeed, evolution is closely
related to the changes in the genetic make-up of species that
have occurred over eons. Those who survived were those best able
to live in a way that allowed their genes to function best.
This trial and error method is effective in
selecting out “the fittest.” We are still made up largely of those
genes that have developed during these thousands of years. The
lifestyle that is most likely to keep those genes happy is probably
the one most similar to the environment in which those genes developed.
The question we should ask ourselves, then, when we’re trying
to decide whether to do something or not, is, “Would a Neanderthal
man have done this?” If the answer is no, we may want to pause.
Though obviously an oversimplification, there
is much merit in using as a second principle for how to keep healthy,
“Live like a Neanderthal.”
Learn!
Finally, the third secret of staying healthy
is to learn. Years ago, for example, many of us loved to watch
our toes wiggle as shown by the fluoroscope instruments in shoe
stores. Little did we know that we were irradiating ourselves
with damaging doses of X-rays. Now that we know more about the
damaging effects of radiation, we know to avoid them if possible.
If we don’t know that the eye drop we’re using
to treat our glaucoma can cause us to be extraordinarily fatigued,
confused, or sexually dysfunctional, we are not likely to attribute
those symptoms to the use of the eye drop. Consequently, unless
the ophthalmologist asks us about them, we may not volunteer those
symptoms.
And if we know that glaucoma tends to get worse
because the intraocular pressure is too high and that the eye
drop that we are using lowers our intraocular pressure markedly
we are far more likely to use those eye drops.
If we know that glaucoma is a condition in which
the optic nerve tends to deteriorate, when our ophthalmologist
tells us that we’re fine but he has not examined the optic nerve,
we know that he can’t really tell us that we’re fine. In such
a situation we will know to ask something like, “Has my optic
nerve showed any change?” Should the ophthalmologist ignore the
question or disparage it, we will know that we had best seek care
with somebody else.
Knowledge is power. The more we know the more
powerfully we can manage our own lives.
Summary
In summary, three important ways to be as healthy as you can
are:
- learn to listen to your inner ear
- live like a Neanderthal
- learn a lot
You Can Make the Difference
If you have not yet received
the Foundation's 2000 Annual Fund appeal letter, please click
here to read this important message from Dr. Spaeth. For
those of you who have already made a gift -- Our Sincerest Thanks!
If you haven't sent a gift,
we hope you will take a moment and do so
now.
Annual gifts this year are
especially important. They'll help us staff our new Glaucoma Research
Center, provide information to patients and families through our
web site and this newsletter, and help train a new generation
of glaucoma specialists.
Please help us reach our goal
of $200,000 before the end of the year. Your gift WILL make a
difference!
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