LIVING WITH KC
Eventually you will learn to live with KC whether
surgery is necessary or not. People react differently
to the news that they have KC and often group discussion
can be enlightening and reassuring. Lack of knowledge
often creates fear.
Perhaps there is no better psychological therapy
than sharing your experiences with others in similar
circumstances. Several "self-help" meetings
arranged for this purpose under the auspices of the
National Keratoconus Foundation proved extremely
helpful
to the participants. KC sufferers shared their personal histories in relation
to KC with others. While all persons had many problems in common, each had
experiences unique to themselves or to just one other person in the group.
A common experience was, of course, a blurring or
lessening of vision in One or both eyes. Almost everyone
related their experiences with contact lenses, ranging
from complete satisfaction to downright discomfort,
and a realization that their ability to function
normally was dependent on the performance of their
contact lenses.
"...sharing your experiences
with others similarly affected can help"
A remarkable variety of patterns
of development of the disease emerges from individual
case histories. In one group these ranged from an
individual who, though afflicted at an early age
with KC, has experienced relatively little limitation
in their vision, to a rare case involving a pattern
of several surgeries, a succession of contact lenses,
and a goodly number of eye care practitioners. Of
those who had undergone corneal transplants, results
were excellent. There was the contrast between one
middle-aged person who had just had a corneal transplant
two months prior to the
group meeting and was doing very well, as compared to another who described
his experience with graft rejection. Another individual suggested that KC has
a very real effect on one's personality whether that person realizes it or
not. For example, it may
be related to feelings of frustration, anxiety and even depression. Still another
individual estimated that over a two-year period they had spent two days a
month in an ophthalmologist's office. However, most reported seeing their eye
care practitioner once or twice a year.
". ..corneal transplant results
are overwhelmingly excellent"
From a medical standpoint the most important thing
you can do is to keep in touch with your eye care
practitioner and follow his/her instructions and
prescriptions.
From an emotional and psychological standpoint,
it is important to understand the nature of keratoconus,
to develop a positive attitude of accommodation with
the disorder, and to talk freely about it with family
and friends and be sure that they understand it.
If at all possible, talk with other keratoconus patients.
This may be the most satisfying conversation of all.
The mutual sharing of common experiences in any phase
of life is always rewarding.
It is not always easy to locate others with keratoconus.
The National Keratoconus Foundation maintains a registry
of KC patients and organizes self-help groups in
various communities. For more information, contact
us by telephone or mail.
"...keep in touch with your
eye care practitioner and follow instructions"
Finally, while it is important that
you philosophically accept keratoconus as a fact
of your life and realize that you have to adapt to
it, understand that adapting is not surrendering.
Those persons who participated in the NKCF self-help
groups were almost without exception achievers despite
their disorder. Some of them related very serious
distractions caused by KC yet these same persons
had realized significant success in their chosen
fields. All of them emphasized that KC should not
stop you from accomplishing your goals but will even
serve as a motivator. Persons from all walks of life
have experienced this disorder, including many individuals
famous in politics, entertainment, medicine, and
business.
"Adapting to KC is not
surrendering"
Persons who handle their KC problems successfully
develop their own coping mechanisms. These include
wearing sunglasses for driving, carrying extra contact
lenses, and planning ahead for even local trips by
using a map, because of the problem of reading street
signs. Plan time to remove contact lenses and rest
your eyes during the day. In fact we discovered that
some individuals maintain secrecy concerning their
keratoconus lest it interfere with getting Work,
receiving promotions or (in the case of professionals)
with the acquisition of clients.
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