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Anna Brilliant's Story
Testimony from the NJ CRPS Awareness/Education Bill
Hearing
Good afternoon Senators. I am Anna Brilliant, an eighth-grade
student at Hillsborough Middle School in Somerset County.
I am an honor roll student and a very active athlete.
When I was one-year-old, my mom, dad, and I were in a car
accident on Route 78. Someone crossed the highway and hit
our car twice. My mom and I had minor injuries, but my dad
experienced extreme pain immediately. In 1997, two years later,
my dad was diagnosed with complex regional pain syndrome (CRPS).
For the rest of my life, this will affect me in many ways.
When I was younger, I guess you could say I was extremely
hyper. I was always running around, playing catch, or practicing
my hitting for softball. My dad always tried to help me, but
his help was limited. He couldn't, and still can't, squat,
run, jog, or put any pressure on his left ankle of his bad
foot. Because of this, he was unable to help me as much as
he would have liked. Currently, I play girls traveling ice
hockey. He has tried to help me with my shot, but is again
unable to, because it would cause him to put too much pressure
on his ankle. When I needed help with skating, he couldn't,
because he can't even put ice skates on, let alone skate.
When my family and I go on vacation, my dad brings his electric
scooter to help him keep up with my brother, sister and I,
since he is unable to walk even short distances. We have been
to Hershey Park, Disney World, Six Flags, visited 21 states,
and took a cruise to Alaska. Each time he brought the electric
scooter, because his CRPS doesn't stop him from enjoying his
family. This summer we went to Gettysburg, Pennsylvania, and
were just walking around the town, and he was unable to keep
pace with us, so I had to go back and get his scooter.
CRPS has caused many problems in our family. My dad cannot
walk ramps or tolerate any vibrations. He has a hard time
riding the train or going on rides with his children. This
causes him to miss out on rollercoasters, and many other experiences
that he had enjoyed before. Finally, my dad is very sensitive
to the weather. If it is 80 degrees during the day and drops
to 60 degrees overnight, his foot will start throbbing immensely.
Yesterday, when we all woke to the beautiful snow, my dad
had already been in pain since Saturday morning due to the
coming weather changes. I swear my dad can predict the weather!
CRPS has affected me on an even more personal level. In fourth
grade, I injured my ankle in gym during a physical fitness
test. The doctors said I sprained it and to stay off it for
a little bit. I didn't do too much for the next week, and
when I was feeling better, I started all my normal activities
again. I participated in skating, went back to gym class,
ran around at recess, and played softball. This, unfortunately,
made my ankle worse. So I went to three more doctors in New
Jersey and New York, who said that I had nerve damage, but
also that it may be something more. I had to stop skating,
participating in gym class, and running around.
All the doctors thought that I may have had CRPS, but my parents
were only going to hear that diagnosis from one doctor: Dr.
Alyssa Lebel, an anesthesiologist and neurologist in Boston.
She helps kids and adults with all types of neurological pain
conditions. She was my dad's former doctor in Philadelphia.
After watching her help my dad for years, I wanted to become
a doctor to help people and find cures. Despite moving from
Philadelphia to Boston, Dr. Lebel has been my role model for
years. My parents drove me all the way to Boston, where luckily
Dr. Lebel said that I only had peripheral nerve damage and
not CRPS. I had physical therapy three times a week for about
18 weeks, and then for another year I went once a week. I
started doing more activities, and took up tae-kwon-do. Since
my legs were uneven from how I walked for almost two years,
the doctors again made me stop. Then, finally, I visited my
NY doctor and he said yes, I could play hockey again! So I
started with 15-minute lessons, then 30 minutes, and now I
can't stop skating.
I went through a lot of pain. I couldn't walk or run, my bus
rides to and from school hurt, and, like my dad, I couldn't
put any pressure on my foot. Now I know the saddest part of
my experience was that my pain was only a quarter of what
my dad and other innocent people suffer each day.
Since most NJ doctors have limited knowledge of CRPS, my dad
and I always went to specialists in Philadelphia, New York
City, and Boston. Many people in NJ are still in pain, because
most doctors have never even heard of CRPS, so many people
still suffer without any sort of diagnosis.
This bill will help educate all medical personnel, so that
people will not have to go to five, six, or even seven doctors
just to find out why they are in constant pain. People who
are suffering should not have to waste their time with multiple
doctors. They should be able to see one doctor who is familiar
with CRPS, and be able to receive treatment right away. Right
now this is not happening in NJ. I heard stories from attending
the support group my dad and mom help run and lived through
it myself.
Please consider all the people who need help and can't get
it, simply because doctors have never heard of such a widespread
disability. I have done my part in educating my school nurses,
teachers, friends, and family. My Girl Scout troop and I helped
Living with RSDS [a support group in NJ] with their first
awareness campaign this past month. For the last two years,
I volunteered at the RSDSA's "Bounty of Hope" dinner,
whose proceeds fund research. Now I ask you to do your part
by approving this bill and spreading the word.
In closing, Senators, I want you to know that every Christmas
I only have one wish. This is for my dad to get better and
be in less pain. I know that you can't cure CRPS, but you
can provide the education to doctors who CAN. Please give
me and other CRPS sufferers the gift of hope. Thank you.
Added December 12, 2007 |
