Kelly Slauson’s optimistic nature is contagious.
Within a few minutes of meeting her, it’s very plain to see that this 20-year-old college student is most definitely a “glass is half full,” kind of gal.
Slauson balances a lot on her plate. She is pursuing a nursing degree at the University of Portland, working as a nanny and spending time volunteering for local and national non-profit organizations. In the past, her activities have included playing soccer and rowing.
All of these activities and responsibilities alone would be more than enough for any young person to juggle, but factor in the significant and painful health issues she’s had to deal with throughout most of her life, and that genuine sunny outlook she has about the world is even more inspiring.
When she was 18 months old, Slauson was diagnosed with rheumatoid arthritis. It’s a chronic autoimmune disease with symptoms including inflammation of the lining of the joints, which has the potential to cause pain, loss of function and even disability.
“Before I would go down for a nap I’d be walking,” Slauson said, recounting the story she has heard about her life as a toddler. “After I’d get up, I’d be crawling, and then I’d slowly get up and walk with a limp.”
Her mom, Lynne Slauson, a pediatric nurse, knew immediately something wasn’t right.
“Sometimes, when you talk to other parents, they say the symptoms are subtle,” Lynne said. “But hers were pretty dramatic. She literally stopped walking, and would wake up in the morning and crawl. Kelly was never a crawler, she was always go, go, go.”
The family pediatrician suspected arthritis, and a rheumatologist at Seattle Children’s Hospital confirmed the diagnosis.
At the time, Kelly was the facility’s youngest patient.
“It’s pretty devastating when you start reading about it,” Lynne said. “At that time, there wasn’t a lot of treatment options. The more that you read about the potential for disability, it’s quite overwhelming. Will she end up in a wheelchair? What is this going to look like in terms of disability?”
Rheumatoid arthritis is primarily considered an older person’s disease. In fact, the majority of people who have rheumatoid arthritis are diagnosed at middle-age. The average age of a sufferer is 66.8, according to the Arthritis Foundation.
But, as Kelly’s case clearly illustrates, children can be afflicted with it as well.
According to the Arthritis Foundation, 300,000 children ages 17 and younger are affected with arthritis or other rheumatic conditions. Of those, an estimated 50,000 have juvenile rheumatoid arthritis.
Kelly’s treatments began with once-a-week injections of the drug methotrexate — the foundation of all of the treatments she has received throughout her life so far.
“When I was little, I thought everybody got a shot on Friday nights, and they got to see a lot of doctors and came home with stuffed animals,” she said. “I had a very normal childhood. I was playing soccer.”
When she was 8 years old, Kelly even went into remission and was taken off of all arthritis medications. But when she was 11, the disease returned and the second time around she was forced to deal with many of its misconceptions.
“Adolescence was difficult,” she said. “When you have sore joints, kids are mean. They don’t understand. I think my biggest frustration was not having people understand, or having people make statements based on a lack of understanding. That is a part of the whole misconception — that arthritis is something old people get. It’s a whole different class of autoimmune disorder. That was always very difficult.
“When I would have to sit out from PE or stuff like that, they’d say, ‘you’re faking it,'” she continued. “So I just stopped telling people that I was going through this. It was easier for them not to know, and for me to just deal with it. That is what made the relationship with my family so much stronger. I was really frustrated with my peers, so I just hung out with my family who understood what I was going through.”
Kelly’s family became her safe place to fall. They were supportive and loving, but also kept her grounded.
“One of the first things on the first visit that the doctors tell you is that you need to make every effort to create a normal childhood,” Lynne said. “This kid is no different. She has all of the chores, and everything else. You don’t alter that. It makes a big difference in terms of recognizing that they are just a normal kid and this is something they deal with on the side.”
Sometimes the medications Kelly received would make her sick, so the whole family — her mom, as well as her dad, Dan and older brother, Peter — would stay home and watch movies or spend time together around the house.
“It was never a big deal,” Kelly said. “It was just something that we did.”
Kelly said it’s this kind of support that has helped her along the way, allowing her to stay positive and productive and even go on to help others who are going through what she has faced and continues to deal with today.
“Kelly very quickly took all of the tools and applied them just amazingly in her life, and has done a great job of advocating for other patients.” Lynne said. “We’ve been so blessed to have access to care and have great insurance that allows us to do that.”
Kelly has worked as a counselor and served on a young adult panel during Camp JAM (Juvenile Arthritis Matters). Held one weekend each summer at Canby Grove in Canby, Ore., it is attended by kids with arthritis and their families and includes activities for children and informational sessions for parents.
“They feel like they are alone in it, and nobody else understands,” Kelly said, describing the initial emotions of some of the kids who attend the camp. “They think it’s going to be all bad. All of these injections and doctor visits, it’s not a lot of fun. But without this disease, you wouldn’t have the opportunity to meet such incredible people — doctors, nurses — and have all of these great opportunities.
“We try to help them remember that they are not alone in this,” she continued. “We can be here to support one another and lay out our common frustrations.”
In December 2007, the Slauson family and their friends registered for the annual Arthritis Foundation Jingle Bell Run & Walk, forming a successful fundraising team called the “Red Hot Kelly Peppers.” Participation in the event has now become a tradition. The Slausons were even a top local fundraising team for several years.
While she attended high school at Central Catholic in Portland, Kelly’s work with the Arthritis Foundation as well as the American College of Rheumatology to raise awareness took her to Washington DC three times to lobby Congress about a proposed arthritis prevention, control and cure act.
Today, Kelly’s treatments include those same once-a-week methotrexate injections, in addition to a 30-minute infusion she is administered every eight weeks. She’s also approached the disease holistically, trying yoga, acupuncture and hypnosis to control the pain in her body. She focuses on getting enough sleep and having proper nutrition.
X-rays so far indicate no signs of permanent joint erosion or damage.
“We were really fortunate to receive the diagnosis and begin treatment really quickly, to avoid joint damage,” Lynne said. “A lot of kids who are ultimately diagnosed with this don’t have that privilege. It can be a long process, and they aren’t always able to get on medications right away to stop the joint damage.”
Although arthritis now prevents Kelly from being able to participate in sports, she instead opts to attend Portland Thorns and Timbers soccer games, or watch college football with her dad.
“Now I just watch from the sidelines,” she said. “I’m OK with that.”
As for Kelly’s long-term prognosis, Lynne said her daughter will continue with the current treatments as long as possible. If those stop working, they’ll try something else.
“There are such promising therapies,” said Lynne, who has lived in Camas with Dan for the past three years. “We are not at a lack of treatment options. We will do what we can until it doesn’t work anymore, then we’ll try something new. We’ve done that plenty of times.”
For now, Kelly is happy to be living the life of a college junior and is looking forward to graduating and becoming a registered nurse in two years. She simply takes it all — the good days and the bad days — in stride.
“We used to go to Children’s Hospital in Seattle and see children there with cancer,” she said. “That made me think — you know what, this could be worse. I’m able to function on a daily basis, I have a great mom who is my battle buddy, a great family support system, and a wonderful school community. I am absolutely very fortunate. I might as well make the best of it. I’ve tried to always focus not on what I can’t do, but what I am able to do.”