~My Personal Journey With Blepharospasm~
I would like to share with you my "Journey," resulting
from a quite rare disorder that is continuing to be misdiagnosed by the
general medical community. Very often it is dismissed as a psychiatric
problem. The disorder I speak of is called Benign Essential Blepharospasm,
which can very often render a person functionally blind. I am personally
one who suffers from Blepharospasm. However, please understand, I am not
alone in the suffering. Many people with whom I have spoken with, share
very similar stories. One of who suffered for 17 years without a proper
diagnosis, and therefore without appropriate treatment.
Today I am the Arizona State Coordinator for the Benign
Essential Blepharospasm Research Foundation. I look back on everything
I had to go through to gain understanding, and I want to do as much as
I can to help others who may be in seclusion and suffering with desperation
to receive an early diagnosis, and subsequent early treatment. Our goal
is to educate not only Physicians, but the public as well. There is no
known cure for Blepharospasm, and the cause is only speculative. However,
we are beginning to learn that the origin of dysfunction is in the basal
ganglia of the brain. Knowledgeable physicians also know that this disorder,
in some cases, can be progressive. The progression may begin to affect
other facial muscles (Meige syndrome), giving the patient spasms and looks
of facial contortions. However, many patients never progress beyond Blepharospasm
(I feel fortunate to say, I am not affected beyond Blepharospasm). Very
often, due to embarrassment many patients will go into seclusion. I will
probably not see a cure in my lifetime, but hope with all of my heart that
my children may see one in the future.
In 1992 I began to notice some changes with my eyes.
They were somewhat subtle, but troublesome with excessive blinking, watering
and burning. I contacted my primary care doctor who felt that I must have
an infection, at which time he started me on steroid eye drops. When after
months of treatment and no relief, my physician concluded that it must
be psychiatric. I was referred to a Psychiatrist, where I was put on antidepressant
medication. However, the condition with my eyes worsened. My eyes began
to squeeze closed for minutes at a time. I had absolutely no voluntary
control. The only way I could open my eyes was by using my finger to pry
the eyelid open. Eventually the duration of the forcible closure became
longer and longer. I could no longer carry on a normal conversation with
people, due to the fact that I could not keep eye contact. One of the very
strange aspects in which I noticed was; when speaking in animated conversation,
my eyes would open. However, as soon as I would stop to listen, my eyes
would squeeze closed again. As you could imagine this brought about curiosity
among people I came in contact with. I continued to try working through
all of this. I guess I thought it would eventually go away. After all,
I was under the care of my family Physician and a Psychiatrist. I also
continued to drive, and while on my way to work one day (holding my eye
open), I was in a minor car accident. That was the day I realized I could
no longer live my life as I had been accustom. At the time I worked as
a medical transcriptionist. My eyes were getting worse, but I continued
to struggle through the work day. The last day in which I worked in this
position was terrifying. My eyes were squeezing closed with no relief at
all. A friend that I worked with finally said, enough is enough, and called
a neurologist friend of his. I was able to see him that day. This Neurologist,
after a few tests, diagnosed me with Myasthenia Gravis and I was put on
oral medication.
After a week at home and still no relief, my employer
called to tell me they were letting me go. At this point I did not have
the emotional strength to fight. I returned to the neurologist and cried
that the medication was not helping. He told me to discontinue the medication.
However, he was steadfast that I still had Myasthenia Gravis. I was told
to just wait, it would go away. I was angry, hurt and confused. Why was
no one helping me? I was beginning to sink into a deep depression. I could
not even walk across the street for fear of being hit by a car.
I went into seclusion, with little income, sleeping for
many hours and feeling very alone. By this time my eyes were clenched closed
all of the time. I thought I had done everything I could to find help,
with no relief. My family could not understand. "Just open your eyes,"
they would say. Believe me, I would have If I could. I looked at my future,
and at age 36, did not know how to live like this. For approximately two
years I battled with the question; What is happening to me?
Finally while being treated for depression, my psychiatrist
referred me to Barrows Neurological Institute in Phoenix, Arizona. I was
frightened and a bit apprehensive. Were they going to tell me to just wait
and it will go away? I was examined and told that I did not have Myasthenia
Gravis, I had a disorder called Benign Essential Blepharospasm. He explained
to me that the disorder was not fatal, however there is no know cause.
I asked; "So how do you fix it?" Unfortunately, because there
is no known cause, there is not a cure. However, I was told that there
may be relief from the spasm with injections into the muscles of my eyelids.
The medication used in the injections is called botulinium toxin (or Botox),
developed by Allergan pharmaceuticals from botulism toxin. I began my injections
shortly thereafter. After about 10 days my eyes began to relax, I could
open my eyes again. How ironic, I thought, that one of the most deadly
toxins known to man, may very well give me my life back. I was also given
the name of the Benign Essential Blepharospasm Research Foundation, and
was told that there were local support groups for this condition.
After suffering for two years alone and in seclusion,
I finally spoke to another Blepharospasm patient over the phone. I cried
with relief. She went through as much as I did, before receiving a proper
diagnosis. Since that time I have had to go through a grieving process
to finally gain acceptance of life changes. After a while Botox injections
were only lasting 4 to 6 weeks, at which time I began to consider limited
myectomy surgery. I did my research and came to the conclusion that the
best place for me to go was to Salt Lake City to see Dr. Richard Anderson.
In April of 1996, I received a limited myectomy (removal of part of the
muscle that controls closing the eyelids) by Dr. Anderson. The results
have been astonishing, however I still need Botox injections every
three months. Botox is now more effective since surgery, and I can go a
full 3 months. I have learned, with the help of the Foundation, other patients,
and experienced Physicians that my condition can be managed. Because
of the wonderful Physicians, the Foundation and others suffering from Blepharospasm,
I have now regained a large portion of my life.
Today I assist the Research Foundation , on a volunteer
basis, by organizing support group meetings in Arizona, speaking at Physician
and patient conferences as well as assisting patients with Physician referrals.
Currently, along with Physicians and staff from Barrows Neurological Institute,
and Mayo Clinic, I am involved in the initial organizational plans for
the Foundation's International Conference to be held in Scottsdale for
the year, 2001. It is a challenge, but I believe my heart is
truly in it!
My heart sinks every time I receive a call from a new
patient with Blepharospasm. Hearing their stories takes me back to my days
of suffering. However, I tell them that we are here to help, and they will
now be able to rebuild their lives, with appropriate treatment. My goal
now is to get the word out. There needs to be more awareness on this disorder
by the general medical community and the public. Recently there was a small
article published nationally by Dr. Donohue regarding Blepharospasm. In
response to this article, the Foundation in Beaumont Texas received over
500 letters and phone calls from people who believe that they may be afflicted.
Many of whom have gone without a proper diagnosis for many years.
Although Blepharospasm is not fatal in itself, the depression
and despair may very well be. The despair and helplessness was very real.
I have now learned to integrate Blepharospasm into my life. I know my limits
and I know my strengths. I know now that I am not alone, and a part
of my future will be found with continued research for a cause and cure
for such a potentially disabling disorder as Blepharospasm. Unfortunately,
and due to lack of education, there are still people out there, very much
alone with the sufferings of Blepharospasm. We all can help. Let them know
that there is help and they don't have to live in the dark any longer.
We cannot all make "Waves," but we can surely makes "Ripples."
The ripple effect can produce a much greater impact.
Please take a moment to learn more about Benign Essential
Blepharospasm at our national web site: The
Benign Essential Blepharospasm Research Foundation or visit our Arizona
BEBRF Support Group web site: AZ
BEBRF Support Group
~A New Strength~
There are times in every
life
when we feel hurt or alone......
But I believe that these
times when we
feel lost and all around
us seems to be
falling apart, are really
bridges of growth.
We struggle and try to recapture
the security of what was, but almost in spite of ourselves, we emerge on
the other side with....
a new understanding,
a new awareness,
a new strength.
It is almost as though we
must go through the pain and the struggle in order to grow and reach new
heights.
Love To All,
Lori
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