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Beating JA is a Family Fight
By Dianna Borsi O'Brien
Six-year-old Ryan Wood has extra reasons to be excited about a new bike.
Sure, it's new, black, shiny and fun to ride. But this bike is a prize, awarded to Ryan and his family for raising the most money in the Arthritis Foundation's summer fundraiser, the Beat the Heat Bike Ride.
In addition, Ryan has arthritis and his new bike will help him stay active while avoiding the jarring, jolting effects of running that aggravate his already painful joints.
Ryan was all smiles, jumping from one foot to another -- no sign of painful, swollen joints -- during the formal bike presentation.
And that is how it goes with Ryan's illness.
"One day he's perfect and another day he won't be able to move," said his father, John Wood.
Ryan has systemic juvenile rheumatoid arthritis, a type of juvenile arthritis that affects his whole body, not just a few joints. This is the rarest type of juvenile arthritis.
Yet juvenile arthritis itself is not rare - it affects about 285,000 children nationally - more than those affected by juvenile diabetes or cerebral palsy, according to the Arthritis Foundation.
Fear of the Unknown
Ryan is stumped to give advice for other kids with arthritis -- "Climb in bed and sleep?" he asks? His uncertainty may reflect his new adjustment to juvenile arthritis.
Ryan was diagnosed in April, three months ago, a mere four months after he first showed symptoms of the disease.
In some ways, Ryan is lucky. A diagnosis of juvenile arthritis can take much longer, sometimes even years.
His parents first noticed his symptoms in January following a skiing trip. He said his wrist hurt and his parents assumed he fell and they tried giving him a brace. But then he started getting a rash at night. The rash improved, however, Ryan experienced high fevers, with temperatures approaching 104, said John Wood.
"During the day he would be fine and then around 5:30 or 6 p.m., he'd start acting like he would not be able to walk and then the chills and the fevers would start," John Wood said.
"That was every day for a while," he says recalling those frightening times before Ryan was diagnosed.
The first few physicians the family visited concluded that it was a reoccurring virus that Ryan would outgrow. Finally, a physician referred the family to a pediatric rheumatologist, James Cassidy, M.D., with the University of Missouri Health Care.
Juvenile Arthritis
Rheumatoid arthritis, especially juvenile rheumatoid arthritis, can be difficult to diagnosis because there is no one single lab test to identify the disease.
In addition, the nature of the disease includes ups and downs. The downs are called flares and are periods of time when the illness is more active.
Rheumatoid arthritis is an autoimmune disease, which means the body mysteriously starts to attack its own tissues in the joints and in some cases in other organs as well.
But there is hope for Ryan.
His parents persisted until he received an accurate and early diagnosis, one of the keys to heading off significant damage from the illness, says Kim Miller, one of the Missouri's five Juvenile Arthritis Care Coordinators. Miller works with Cassidy to help children with arthritis and their families receive the care they need.
Ryan's parents' involvement is another good sign, said Miller. "When the parents are involved, (the kids) know there's someone looking out for them and things are going to be done to take care of their pain," she said.
When a child's treatment and medication is neglected, he or she could be in a wheelchair or even blind, Miller explained.
While there is no cure for arthritis, Ryan's parents make sure he receives the proper medical care. In addition, there are new medications to help Ryan and others with juvenile rheumatoid cope with the pain and the symptoms of this serious, chronic disease.
Ryan takes several different medications, including methotrexate, one of several drugs that help delay, and in some cases, stop the progression of the disease.
A Family Disease
The disease may attack Ryan's body but it affects his whole family. John Wood explained his family quickly learned to not over-schedule their son.
"We have to think about what we're doing and how we're doing it," said John Wood. "We've slowed down a lot."
At first Ryan's family gave up one of their favorite activities - taking off on a quick trip for a day or two. Ryan's illness and reaction to medications were too unpredictable.
And when the Woods travel, they make sure the trip includes plenty of time for rest. While Ryan's illness is more under control, the family still takes his health into consideration at all times. For example, after an active day, such as a recent family reunion in St. Louis with his cousins "going 100 mph all day," John Wood knew his son would need a few days of rest to recover.
The family also keeps a wellness journal for Ryan. At first his disease was so unpredictable and his medication needed to be adjusted often, Ryan's parents needed to keep track of his medications and activities and record his reactions.
They are looking ahead as well.
The family has asked their juvenile arthritis care coordinator to visit his school when Ryan starts school in the fall.
Miller, the coordinator, said she will tell his teacher about unobtrusive ways to help Ryan keep moving during the day so he does not get stiff. For example, she said, Ryan could be asked to hand out papers during the day, to sharpen pencils for others and to be encouraged to go for drinks of water frequently. Ryan will also be supplied with a second set of books to save him from carrying his school materials to and from school.
Joining Forces with the Arthritis Foundation
John Wood said he and his wife decided to get involved with the Arthritis Foundation for several reasons.
"We figured we might as well be proactive with it, see about what we can do and not get caught by surprise," he said. The Arthritis Foundation offers educational materials and programs that can help people learn how to manage their disease. Such self-management programs can, according to research, help decrease pain and the number of physician visits.
The family's decision to assist with fund raising made sense, he continued, since the Arthritis Foundation funds arthritis research could some day lead to a cure for the disease.
The family also is eager to work with the Arthritis Foundation to get the word out about juvenile arthritis in general.
"We want to let people know it's not just older people who get arthritis. A one-day old infant can get arthritis," said John Wood.
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