My Voice: Brittney Berkey
Brittney Berkey was profiled in the September 2008 issue of Scleroderma Voice, shortly after she received her initial scleroderma diagnosis when she was 12.
This fall, the 16-year-old from Canton, Mich., will enter her junior year of high school. Like many other teens, she has her driver’s license and has a part-time job (working for a catering company.)
Voice editor Christina Relacion had the chance to catch up with Brittney to see what has changed now that she’s getting older and has lived a few more years with scleroderma.
CR: What is it like being a teenager with scleroderma?
BB: Even though I have scleroderma, I still live a normal, teenage life. I just have to remember to take my medicines. But sometimes I have off days where I can’t hang out with my friends or I have to go to a doctor’s appointment.
CR: What has changed with your scleroderma in the past few years since we last spoke with you?
BB: My lungs are getting worse so now I use an inhaler. Otherwise, my doctors are weaning me or lowering doses from some of my other medicines because I’ve been doing better.
CR: Now that you are older, do you understand more about your disease?
BB: I do understand it better. I can tell when I’m getting sick so I can be proactive and ask my mom to call the doctor, or I’ll talk to my doctor myself.
Since I’m older, I feel more comfortable talking to my doctor. When I was younger, my parents really did all of the talking. My mom is making me be independent so now I tell my doctors things that have happened or when I’m not feeling well.
It has been very easy to transition and manage my own care. I go to the children’s hospital in our area so my doctor is very understanding of my case and working with young patients.
CR: How hard has it been to learn how to drive or work part-time, or even go to high school with the disease?
BB: Sometimes it can be hard to go to work. I work for a caterer at weddings and banquets so I serve dinners during receptions, working nights and weekends. I have to fight through long days, manage the time well and fight through it if I’m not feeling well. Then, the next day I know I will need a long day to recover from the work.
I do miss a lot of school because of doctor’s appointments. Two years ago when I started high school, my mom put together a packet of information about scleroderma and the medicines I take to explain my situation to my new teachers. We have found that some are very cooperative, and some aren’t. It’s a big school so sometimes you just get lost in it.
CR: Now, if you can pull out your crystal ball, where would you like to see yourself in five years in regards to your disease and, personally, as a young woman?
BB: For scleroderma, I want to be stable and balanced. Everything right now is controlled with medicine so I would like it to stay like that. For me personally, I want to graduate college and start a career, maybe as a dental hygienist, to begin that adult life. For a while, I wanted to be a baker but now having scleroderma, it has really made me interested in the health care field.
This story originally appeared in the Fall 2011 issue of "Scleroderma Voice" magazine.
- Patients & Newly Diagnosed
- Healthcare Professionals