February 29, 2009
Brianna Tulin is only 13 years old and, with the help and support of her father, has already taken several steps to help others better understand fibromyalgia; she even completed a school project about FM. Her desire to bring awareness to and educate others about this life-altering pain condition stems from her personal experience. Brianna, a seventh-grade student at Solomon Schechter Day School in West Hartford, Conn., has grown up with a mother who has multiple health issues, including fibromyalgia (she was diagnosed with FM in 1990).
Q. Where does your strong sense of community service come from?
A. I feel that it is important to do things that can make an impact on others. Also, my dad has been involved in things in town. Both parents were very active in my first school and even my brother was participated in activities throughout high school.
Q. Why did you choose fibromyalgia as the topic for your school project?
A. I don't think a lot of people know about fibromyalgia, so it seemed like a good idea due to my mom's situation—and also a chance to draw awareness to a disease people don't know about and most doctors don't know how to deal with.
Q. What were some of the things you did for the project?
A. I created a three-fold display that has information about the NFA, basic info about fibromyalgia and a few paragraphs about my mom and living with a sick parent. We met with our state senator, who introduced a bill in the Connecticut Legislature that will recognize Fibromyalgia Awareness Day. There will be a public hearing soon on this bill and I will be testifying about why it is so important to recognize Awareness Day. I also wrote to our mayor in Berlin, Ct., and the town of West Hartford, Ct., about issuing a proclamation to recognize Awareness Day. I don't have anything specific planned for May 12, but may have an opportunity to have a table in a mall in West Hartford to give out the brochures and copies of Fibromyalgia AWARE that you sent me in January.
Q. How did your fellow students react to your display?
A. A few of the kids asked me about fibromyalgia because they had never heard of it. They wanted to know exactly how my mother is doing and what it is like. Some parents have gone up to the display at the school and taken literature.
Q. What tips do you have for other people who are thinking about getting a proclamation in their communities?
|Connecticut State Senator Donald DeFronzo with Brianna Tulin|
A. I think that if there are other people that want to contact people in their towns about fibromyalgia it is important to follow through. I was very nervous about meeting our senator but he was very nice and made me feel like I was doing something really good for my mother and millions of others.
Q. Your mom’s health conditions must be very difficult for you.
A. When I was a little younger—even though my mother has been ill all my life—we still went places together and did stuff together. The last few years she sleeps a lot, is very forgetful and is in bed all the time so we barely get to even talk anymore. I try to get in to see my mother and let her know what’s going on as much as I can. My father tries to do what he can to help make my life as easy as possible.
Q. How have your community service efforts helped you?
A. I started to get interested in "politics" during this year’s elections. I talked to my dad and my brother and read about the election for months. When this project was assigned and we started to talk about what to do, it seemed like doing this would be my way of making a contribution to something really important. I also learned about the NFA and ways to make people know about FM and how it affects people like my mother.
Q. What advice do you have for other teenagers who have a parent with difficult health challenges?
A. I think kids that have parents with a bad illness should learn as much as they can about the disease so they know what’s going on better and how to deal with it. Also, really try to help out with things at home as much as possible. I have to help my mom get around, get her things when she needs them and just be available when she needs my help. It isn't easy, but I try really hard to be patient with her and other kids with sick parents should too.