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.
© RSDSA | http://rsds.org/4/youth/anna_brilliant.html