Call it mother’s intuition. When Nicole Doyle woke up one morning with an unexpectedly swollen, hot and painful finger, her mother knew something was wrong. Even though Nicole’s pediatrician initially dismissed the thumb mystery as an injury caused by play, Nicole’s mom kept pressing for answers.
现年18岁的妮可回忆说:“我们看了一个又一个医生，最后去看了一个成人风湿病医生，因为整个美国只有大约250名儿科风湿病医生。”“作为一个三岁的孩子，我不想呆在那里，让他们检查我。我只想回家和哥哥一起玩。”
Nicole’s visit with the adult rheumatologist is a day she will never forget.
妮可说:“我记得医生伸展、弯曲，检查我所有的关节。”“我记得我走进实验室，抱着我的紫色毛绒大兔子，紧紧地抱着。我不想被戳来戳去，但如果我们想要一个答案，我必须被戳去。”
After her visit with the rheumatologist, Nicole was officially diagnosed withjuvenile idiopathic arthritis (JIA). She was just three years old. Soon after her diagnosis, Nicole began seeing a pediatric rheumatologist — there was only one in Minnesota at the time — and started taking methotrexate to control the arthritis in her knees, jaw, fingers and one little toe. Like many kids with arthritis, Nicole quickly learned that methotrexate can cause some brutal side effects.
“The treatment was okay at the start, but then I started to get sick,” says Nicole. “I was soon old enough to know that the medication led to sickness, nausea, vomiting and missing school and activities. I was a little spitfire. I would sneak upstairs claiming that I would only drink my medicine alone, yet I was secretly pouring it down the sink because I didn’t want to deal with the side effects.”
随着年龄的增长，妮可把液体甲氨蝶呤换成了药片，这同样很难吞咽和吞咽下去。
“This is very common for children with JA,” says Nicole. “Sometimes the treatment for the disease is even more painful than the disease itself.”
Nicole took on more responsibility for her disease as she got older. When she was 11 years old, she began giving herself methotrexate injections. Though the nausea continued, Nicole found an ally in her school nurse.
“I remember going to the school nurse often to snack on some saltines,” says Nicole. “My school nurse’s daughter also had arthritis. This was the first time I had a school staff member understand me. She knew I loved school, and she knew that a little break like laying down for an hour would help me recharge. I finally realized I was not the only one affected by JA.”
After a short remission, Nicole began taking etanercept (Enbrel). It works well for her, so much so that she is able to play both hockey and lacrosse for her high school team. Though she often deals with aches and pains, she encourages other kids to keep doing their favorite things.
“Find a way to overcome arthritis through your strength and your hobbies,” says Nicole. “It could be sports, artwork, blogging or anything. Find your thing and don’t let your diagnosis define you.”
妮可的“事情”之一是参加选美比赛。Currently serving as Miss Teen Minnesota, she uses her platform as an opportunity to spread awareness about JA.
“As Miss Teen Minnesota, I am honored to speak at schools, events, fundraisers, and even with children and their families,” Nicole says. “Sharing my story and informing others about this disease is one of my favorite things to do. I encourage other children living with arthritis to do the same!”
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Good luck in your journey . my daughter knows what exactly how you feel. She’s had JRA since he was 1and a half yers old. She’s 27 now