早期积极的治疗和关节炎社区的支持帮助罗斯家族夺回了控制权。
Carson Rose was only a few months old and learning to crawl when his parents, Chrissy and Jason Rose, noticed something off in his movements. Carson avoided putting weight on his wrist and instead “army crawled” on his elbow on one side, but not the other. In hindsight, they said, this was one of the earliest signs of the polyarticular juvenile idiopathic arthritis (JIA) their son, now 7, would soon be diagnosed with.
Chrissy说:“回顾过去，这是我们错过的一个危险信号，因为我们不知道我们在寻找什么，也不知道我们在处理什么。”“我们不知道贾庆林的存在。”
10个月大的时候，卡森开始一瘸一拐地学习走路。His parents — and the first
doctors they took him to — thought he had suffered some kind of injury. When time and the prescribed medications failed to heal it, Chrissy and Jason spent a few months as, “the annoying parents at the pediatrics office,” in Chrissy’s words.
They finally did an ANA (antinuclear antibody) test, a blood test used to diagnose JIA and other autoimmune disorders, and were referred to a pediatric rheumatologist.
However, there was an eight-month wait to see their local specialist, so they made the two-hour drive to a regional children’s hospital. There, 13-month-old Carson received an official diagnosis of JIA, as well as a round of corticosteroid injections done under anesthesia to bring his flaring wrist and knee joints under control.
Hard Decisions
Carson’s doctors followed the joint injections with a prescription for a nonsteroidal anti-inflammatory medication they hoped would control his pain, swelling and other symptoms. The medication didn’t help.
Around this time, the Roses were in the middle of moving to their current home in Indiana. There, new doctors recommended methotrexate, a well-studied and effective treatment for JIA, but one that was originally developed as a cancer drug. Knowing this made the decision tough, says Jason. “I was in some denial at that point. I’d say, ‘Let’s go see another doctor,’ because I wanted different answers.”
但父母双方都知道，他们想在卡森的治疗中采取强硬措施。Chrissy说:“当我们面临开始使用甲氨蝶呤的选择时，这是一个重大的决定，但我们当时决定迅速而积极地尝试处理它。”
Oral methotrexate upset Carson’s stomach, so they switched to weekly injections of the drug. “It was traumatic for him and for us,” says Jason. But they coped, and Carson began to get better.
After a couple years, his parents and his doctors agreed to try to wean him off medication.
“He hasn’t taken any medication in about two and half years, and at the same time he’s become more and more active in sports. There’s been no looking back, just solid looking forward and living the life of a normal child,” Jason says.
Chrissy说:“早期诊断和积极治疗对我们能够尽快控制Carson的JIA起了很大的作用。”关节炎基金会对整个家庭都产生了重大影响，包括卡森12岁的妹妹凯莉(Kylee)。Chrissy在他们搬到印第安纳波利斯时第一次联系上了该基金会。
Joining the Arthritis Community
The family was still in the early days of Carson’s diagnosis when they relocated to Indianapolis in 2013. “I was googling and reading, and we found an Arthritis Foundation JA family day. We went, and from that point we dove in headfirst and never looked back,” Chrissy says.
Now, the Roses are often found at local and national Arthritis Foundation conferences and work together on fundraising walks and events. Carson’s Crew, the family’s Walk to Cure Arthritis team, has raised more than $30,000 in the last three years to support arthritis research.
Carson, the 2019 National Youth Honoree for Walk to Cure Arthritis, is an outgoing kid who enjoys talking to others about his experience with arthritis.
“He’s gotten better and better at expressing himself,” says Jason. “We made a video for the Arthritis Foundation when he was 3, and Chrissy and I did most of the talking. Now it’s him talking, and that’s been so cool to see. He’s kind of a ham and enjoys the spotlight.”
Carson says he likes teaching people about arthritis. “When they see me, they can learn that even though arthritis hurts your body, it doesn’t stop you from doing things that you like. I can still play baseball and basketball and wrestle.”
Kylee也活跃在关节炎基金会的活动中。她的弟弟患有一种需要很多关注的疾病，她的父母对她能处理好这个问题感到自豪。
“Sometimes, with all the doctor’s appointments and other ways arthritis affects the whole family, it can be frustrating for her,” says Jason. “It’s helped her to go to events and talk to other siblings.”
Kylee acknowledges that having a little brother who sometimes gets all the attention can be hard. More than anything, though, she is proud of him.
“He has been through a lot for being so young,” she says. “I like helping with fundraising and teaching other people about arthritis now that I’m older. I think it’s important to remember that having arthritis isn’t fun, no matter how much attention you get. The more ways you can find to be involved, the better.”
With Carson’s JIA under good control, the Roses are focusing on giving back to the community that has given them so much. Chrissy is a resource for families who are just learning about their child’s JIA, while at National JA Conferences Jason has led dad’s group discussions and used his professional skills as a chef to create nutritional workshops. Kylee contributes fundraising ideas and worked a conference registration booth last year.
“The Arthritis Foundation came into our lives when we couldn’t have needed them more and became a part of the family we didn’t know we’d ever need,” says Chrissy. “Now we’re able to give something back and spread some hope about this disease.”
Related Resources:
- Salute JA Warriors During Juvenile Arthritis Awareness Month
- Live Yes! Connect for JA Parents: Q&A with Jessica Ward, JA Parent Facilitator