Advocating for the arthritis community, says 27-year-old Stephanie Kwiecien, has restored the voice that bullying shut down.
“Advocacy is really important to me because it gave me back the voice I thought I’d lost,” says Kwiecien, who was diagnosed with juvenile rheumatoid arthritis (now known asjuvenile idiopathic arthritis) when she was 18 months old. During her elementary and middle school years, Kwiecien’s peers were unfazed by her condition and her teachers were understanding. But high school was different.
一些同学取笑Kwiecien。“这一切都发生在体育课上。我一瘸一拐的，跑得不如其他人快，”她说。“我有点被欺负，因为人们不明白年轻人会得关节炎;它不像我年轻时那么容易被接受。我再也不能告诉别人我有关节炎了。”
One teacher also had trouble understanding—and sympathizing with—the limitations posed byjuvenile arthritis. “I had a class that was on the other side of the building from the class before it. I didn’t always make it to that class on time, and the teacher would give me a hard time about it even after I explained what was going on,” says Kwiecien.
Camp Dakota, theArthritis Foundation’s JA Campin La Pierre, Michigan, provided a place for her to make friends she could lean on.
“I found a group of people who understood what was going on, so we were able to talk to each other. When I had a bad day, they were always there. They might not have been right next to me, but they were always a phone call or an email away,” says Kwiecien. She was a camper for five years, a counselor for four and has returned to camp every year as a volunteer since aging out of those programs.
Kwiecien and a friend she met in her earliest days at JA Camp will be co-directors in summer 2019 at Camp Dakota.
Expanding Advocacy Work
Kwiecien got her first taste of advocating for the arthritis community in 10thgrade, when she joined other volunteers and Arthritis Foundation staff in Washington, DC, to speak with legislators about her disease-related experiences and challenges.
Speaking out was empowering. It helped Kwiecien to become more confident and inspired her to step up her commitment toarthritis advocacy.
Her volunteer efforts for the Arthritis Foundation now include roles as chair of the Advocacy Committee for the state of Michigan, as well as that state’s firstPlatinum Ambassador.
“I’ve gone back to DC to advocate several times, and I attended the JA Conference in Indianapolis for the first time last year. I made fantastic connections with others my age,” she says. “I had so much fun and loved being part of such a wonderful experience.”
As a member of theJA conferenceKwiecien和她的同行们一起担任计划委员会的成员，她为教育会议、演讲主题和让与会者互相了解的有趣夜晚想出了主意。
She finds time for advocacy around her demanding schedule as a loads planner for a transportation services company based in Bloomfield Hills, Michigan.
She hopes soon to find a job that leverages the degree she earned in political science at Wayne State University in Detroit. Her other pressing goal is to expand the arthritis advocacy community in Michigan.
“我想建立[关节炎]社区，以帮助通过使医疗保健更好的立法。倡导让我可以和其他人分享，像我这样的年轻人也会得关节炎，而且这不仅仅是老年人的疾病，”她说。
For those young people struggling with arthritis she has this advice. “Don’t give up. It may be hard, and it may take time, but you can reach your goal,” she says. “There are all kinds ofsupport and resources关节炎基金会提供的即使你没有朋友或家人支持你，关节炎基金会社区里也有很多人会支持和鼓励你实现目标。”
Author: Emily Delzell
Related Resources:
- Become an Advocate
- Learn More About the Arthritis Foundation Ambassador Program
- Educational Rights & School Solutions Webinar & Toolkit