BY ELAINE KLAASSEN
Thirteen-year-old Emily McNaughton was diagnosed with the autoimmune disease juvenile arthritis (JA) when she was 18 months old. She also has iritis, an inflammation that affects the iris of the eye, which is a complication of JA. Almost from the very beginning of her life she’s had an important job to do—manage her physical health. It’s not an easy task. She says she imagines that being able to walk and run without pain would be “like walking on clouds.”
Living with an unpredictable disease, the limitations of pain, and all the different medications’ unpredictable results has made this young woman wise beyond her years.
The Juvenile Arthritis Foundation named her junior spokesperson at their 5K Walk to Cure JA at the Mall of America the first weekend in March. She is an avid advocate for others struggling with the disease, already experienced at fundraising and raising awareness. She keeps her speeches on her phone and edits them all the time, according to her mother, Molly McNaughton.
Emily, an eighth-grader at Our Lady of Peace Catholic School, spoke to every classroom about JA this year during Catholic Schools Week; their service project was to donate to the Juvenile Arthrisis Foundation. Many of the kids joined their classmate at the 5K walk and fundraiser at the MOA, as well. Principal Jan Heuman says, “Emily makes the kids feel empathy.”
The school is a loving, supportive environment for someone who deals with the physical and emotional challenges of pain on a daily basis. And the school benefits from Emily’s unique perspective.
Emily describes her experience like this:
“Hello. My name is Emily McNaughton and I have Juvenile Idiopathic Arthritis and Iritis. When I was 18 months old I started limping, so my parents took me to the clinic where I was sent right away to Gillette. After many tests and scans they diagnosed me with Juvenile Idiopathic Arthritis. At that moment my parents knew that both their lives and their child’s life would be changed forever.
“I had shots to get the fluid taken out on both my knees and left elbow. I was put on Methotrexate, a chemotherapy drug that makes you feel nauseous. I took it in juice and after a year they figured out I had Iritis, inflammation in the eye, and the juice mixed with the medication wasn’t working so I was put on weekly injections, which made me very sick and I would throw up every week.
“At age 11 I was put on a biologic shot and that helped for about a year before they put me on two shots of the biologic instead of one. The doctors told me I should lower my activity level and if I am going to participate in sports I am going to have pain. I became really depressed because I was missing out and being bullied. Often people would tell me you have an old people’s disease or even you’re faking it. I kept asking myself why was I chosen to have this disease and I’m not strong enough. I got extremely frustrated that I could never run the mile at school. I remember when I was younger and still now, everyone saying ‘you are so lucky you get to sit out. I hate the mile.’ I always think to myself, if I could I would. I dream about being able to walk and run without pain, I just imagine it feeling like walking on clouds.
“After a big flare, I went to my rheumatologist and had a discussion about starting a new infusion drug. I almost started crying because I was scared. I didn’t want a new drug, I wanted to be cured and feel better. I was sick of switching medications and not having them work the way I wanted them too. I was done feeling hopeless and in pain. I tried to end my life and ended up being in the hospital for two weeks learning how to deal with emotional and physical pain. I learned a lot and decided that I may have arthritis but arthritis doesn’t have me.
“The infusion medication is helping a lot, so much that when I was playing soccer, someone who has known me my whole life asked if my arthritis went away because I was running so much better. I have run three 5Ks and am hoping to run the mile this spring. I still have days where I can’t get out of bed and some days where getting out of bed and taking a warm bath is all that I can deal with. Arthritis has taught me to never take anything for granted because you never know about tomorrow.
“Arthritis hasn’t only affected me though; arthritis has affected my family and friends too. I may be taking the medications and have the actual disease, but my family and friends fight the disease with me every day. I would like to thank my mom because she has been such a strong leader and I can always depend on her to figure out something as small as turning on a hot tub to soak in, to as big as ordering new prescriptions and figuring out insurance. Huge thanks to Liz Atchison and the Arthritis Foundation staff who have been my right hand through all of this. Through camp [Camp Cambria is a one-week camp for kids with arthritis] I have met many people who are just like me and understand what I’m going through. The National Arthritis Foundation Conference is amazing because you can see how many other arthritis kids and families are out there and how many people support you. I hope one day every child who has arthritis can be a kid and not have to worry about tomorrow. To everyone out there with arthritis, you aren’t alone and so many people want to help you. Always remember it’s not the disability that defines who you are but how you fight it. I really want to thank everyone because you have been there for me through hell and back. I love you all to death and am really grateful.”
