What makes you stronger than arthritis? We asked this question to the kids, siblings, parents and caregivers that attended this year’s National Juvenile Arthritis Conference this summer. We know that any victory is worth celebrating, whether it is being able to tie your shoes in the morning or walking the Walk to Cure Arthritis course. Sometimes it’s not a physical feat that is accomplished, but being able to attend school more or finding a new passion for music and art.
Most important however, is understanding that every person’s situation is different and unique and should still be shared and celebrated. “After all, that’s why the JA Conference was created. To give people the opportunity to discover that JA doesn’t define us, it doesn’t control us and it doesn’t stop us,” said Colleen Ryan, 2016 JA Conference Chair. “Together we build each other up, held one another’s hands, been a shoulder to cry on and a much needed sounding board. Together we are strong. Together we are tough. Together, we are champions!”
Alexis Fox was diagnosed with juvenile idiopathic arthritis (JIA) when she was just 13 months old. With an avid love of gymnastics, music and art, she pursued competitive gymnastics up until she was 12 and her rheumatologist recommended she quit altogether. Cortisone shots were not enough, and the impact of the sport she loved was causing pain and flares. Alexis battled bouts of depression, but found her way back through art, music – and finding her own voice.
“I had to make my health my priority, not the gym. When I was about 14, I felt as if I was finally happy with my choice. All my life I’ve had arthritis, I don’t know any other way. Me being stronger then my arthritis wasn’t a choice – I knew it’s what I had to be, “ said Alexis. She continues, “I have never let arthritis hold me back – I have done diving, ice skating, gymnastics, basketball, you name it. As long as I can do it – I will. Arthritis is enough pain physically; I can’t let it bother me mentally, too.”
For Grace Burns of Pennsylvania, her polyarticular JIA diagnosis also came really early on when she was 20 months old. “When I was first diagnosed my parents were told I wouldn’t be a ballet dancer or a soccer player but at 5 I started player soccer and haven’t stopped! I also play lacrosse as well. Has it been hard? Of course, but it’s what I love,” says Grace.
“The moment I realized I was Stronger then Arthritis was about two years ago when my soccer team was competing in a beach soccer tournament. I had practiced forever and was an important part of our offense line but arthritis had a different plan. I had an unscheduled surgery on my knee two weeks before the big tournament. I didn’t expect to play but I also didn’t want to sit on the sideline. So I did everything my doctor told me to do, my PT exercises and fought through it. Not only did I show up for that tournament, I played and scored! I know no matter what happens in life I will always fight and be strong. My parents tell me how strong I am but at that moment I knew for myself – I am stronger than this disease!”
Grace says, ”I want children to know they don’t have to give up on their dreams. I didn’t have many examples of kids with JIA around me growing up. Actually, I had none. If one child is listening, can hear my story and say, “guess what, I’m not giving up, I’m going to do my own thing and I’m a fighter!” then I can be happy that we all don’t suffer with JIA for nothing. We can all make a difference.”
Thank you to Alexis, Grace and all the teen speakers at this year’s 2016 National JA Conferences who shared their story! Ready for the 2017 JA Conferences already? Stay in touch by liking our Facebook page for timely updates, scholarship and registration information coming.