Lupus is also a disease of flares (the symptoms worsen and
you feel ill) and remissions (the symptoms improve and you feel better). Lupus
can range from mild to life-threatening and should always be treated by a
doctor. With good medical care, most people with lupus can lead a full life.
Carly Mance, 23, was born in raised in
Tucson, Arizona. In May of 2010, she
graduated from Providence College in
Rhode Island and currently lives in
Flagstaff with her service-dog-in-training,
Tugboat. She is currently studying to
apply to graduate school in Boston.
She was diagnosed with epilepsy at the
age of 11 and has since become an
active advocate for epilepsy awareness. Carly shares her story here.
Carly Mance, 23, was born in raised in
Tucson, Arizona. In May of 2010, she
graduated from Providence College in
Rhode Island and currently lives in
Flagstaff with her service-dog-in-training,
Tugboat. She is currently studying to
apply to graduate school in Boston.
She was diagnosed with epilepsy at the
age of 11 and has since become an
active advocate for epilepsy awareness.
Carly shares her story:
My name is Carly, and I have not been suffering
from epilepsy for 12 years. I have been succeeding
in spite of it. Since the day I was diagnosed
with epilepsy at the age of 11, I have made it a daily goal
to approach it with honesty, openness and—most importantly—
positivity. It was the scariest concept to face, but
one that I am convinced has helped me through every
struggle I have faced since then.
That is the attitude that
I was surrounded by at
the National Walk for
Epilepsy this year.
The people I saw
that day are heroes.
My dad and I
decided to volunteer
at the Walk
several months ago.
We looked forward to
it as a learning experience, a chance to contribute to the
cause and an opportunity to meet the people that helped
make it happen. As Course Marshalls, we got to stand and
watch hundreds of shivering and smiling people walk by.
I was elated. Here we all were, joining together with two
things in common: that we all have dealt with a difficult,
complex and misunderstood condition, and that we all
have chosen to take it in stride (literally!).
As much as I wish I could say that epilepsy has not
affected me, and that I am still the same person I would be
without it, I can’t. Having epilepsy has shaped who I am.
But you know what? I’m perfectly OK with that. It took me
about 9 years to find a combination of medications that
controlled my tonic-clonic seizures and before then I went
through a series of taxing procedures, including ambulatory
and inpatient EEGS. (Don’t you hate how they can always
tell when you’ve been scratching at the wires on your
head?) Not to mention, most of my seizures occurred in
the shower—not very convenient—or dignified!
In high school, I was asked to write a first-person feature
article for my school newspaper on what it was like to
have epilepsy. I remember waking up the morning it was
published soaked in sweat and nauseous from the nerves.
But by the end of the day, I was so happy I did it. It was
not only a great release for me, but it was a chance to dispel
some of the many myths about the condition. That is
one of my proudest accomplishments to date. And that
openness and honesty was present at the Walk en masse.
I have so much admiration for everyone I saw at the
Walk this year. These are people that have dealt with
unbelievable challenges—many that are beyond what I
could imagine—and yet they put on their team T-shirts
and walked proudly with
each other, cheering
and laughing in the
face of adversity.
They have accepted
the challenge that
life gave them and
handled it with
bravery, confidence
and humor (particularly
the Cincinnati team with the “Seizure Salads”
T-shirts...well done!).
I want to thank everyone who walked for epilepsy this
year. Whether it was local or national, you have made me
proud to have epilepsy, and honored to be a part of a community
of people that have such support for each other.
This was more than a learning experience for me; it was a
confirmation that people with epilepsy just plain rock.
The In My Own Words column gives people whose lives are affected by
epilepsy the chance to share experiences and solutions to their problems.
These are real stories by real people that show strength, resilience,
optimism and courage. We hope they will inspire others.
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