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Q&A: Juvenile arthritis advocate focused on making a difference for others

Diagnosed with juvenile arthritis when she was 7 years old, Kathryn Sundquist has battled pain and inflammation for most of her life. But that hasn’t prevented her from becoming an advocate for others.

Teenager Kathryn Sundquist has a message she wants to share with the world: Arthritis isn’t just a disease that affects older adults.

Kathryn is one of roughly 300,000 children or teenagers affected by juvenile arthritis. Like the adult version, juvenile arthritis causes pain, joint swelling, redness and stiffness—most often in the knees, hands and feet. Kathryn, from Brainerd, Minn., travels to University of Minnesota Masonic Children’s Hospital for regular care.

She’s also an advocate for juvenile arthritis patients around the state and country. This year, Kathryn is the 2017 National Young Adult Honoree for the Arthritis Foundation’s National Walk to Cure Arthritis. In the past, she’s also participated in a number of awareness and fundraising events on behalf of the Arthritis Foundation.

We caught up with Kathryn to ask her a few questions about juvenile arthritis and her decision to become a champion for others affected by the disease.

For those who are unfamiliar with the condition, what is juvenile rheumatoid arthritis (JRA) and how were you initially diagnosed with it?

I was diagnosed with juvenile rheumatoid arthritis (JRA) when I was eight years old. JRA is one type of juvenile arthritis that causes joint inflammation and stiffness in children 16 or younger. It affects approximately 300,000 children in the United States. It took a few months for my diagnosis; at first I was treated for Lyme disease.

How has it affected your day-to-day life? You love to dance. did JRA make it difficult to participate in this activity or other hobbies/interests?

I am so fortunate because we have found an effective treatment plan that allows me to stay active. I still have days where my arthritis flares up and it is especially challenging when I have 6 a.m. dance practice.

You found a treatment plan that allows you to dance year round. Can you tell us more about the day-to-day management of your condition? What has been effective in helping you?

This past summer I attended the juvenile arthritis conference in Philadelphia and learned about the anti-inflammatory diet. I know it sounds boring, but I got really interested in healthy eating. I started grocery shopping with my mom and preparing some amazing recipes. It’s been challenging making the best food choices during the school year because I’m so busy, but eating healthy definitely helps me feel better.

Learn how you can help Kathryn fundraise to cure juvenile arthritis.

You’ve also become a public advocate for children and teens with juvenile arthritis—which includes being honored as the 2017 National Young Adult Honoree for Walk to Cure Arthritis. Why did you decide to get involved with advocacy?

It was a complete fluke getting involved with the Arthritis Foundation. I was 11 years old and mostly concerned about buying new clothes when my mom’s co-worker invited me to volunteer at the Walk to Cure Arthritis – Northern Lakes. I met Jen Hagerman from the Minnesota Arthritis Foundation. We clicked right away and I’ve been active ever since. REALLY active. Everyone in the Minnesota office has been wonderful and I’ve had a great experience working with the Atlanta staff too!

What is one important thing you want others to understand about juvenile arthritis?

Juvenile arthritis does not grab a lot of headlines, but it’s debilitating for so many children. I love the campaign, “Kids Get Arthritis Too!” Most people still believe only older people get arthritis.

You’ve lived with JRA for nearly a decade. What have you learned in that time about coping with the condition and finding ways to thrive in the face of adversity?

I am so grateful for the opportunity to attend Camp Cambria and different arthritis events where I’ve met other kids with arthritis and understand their struggles. Whenever I’m not feeling my best, I just think about how bad it can be and focus on making a difference for others.