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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.

Brittney Berkey photoThis 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.

 

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