Striking back against juvenile arthritis

Alexa Anderson looks, talks and acts like any other young woman her age.

The 18-year-old Hudson High graduate spends much of her free time these days honing her bowling skills in preparation for making her collegiate debut this fall at Webber International University where she has earned a partial athletic scholarship for bowling.

Looks however, can be deceiving.

Anderson has lived with juvenile arthritis since age 5, diagnosed at age 7, and has beaten the odds.

She was diagnosed with poly-articular juvenile idiopathic arthritis, which is an arthritis that affects more than five joints in the body. She has struggled with this condition throughout her adolescent years. The last five years, she has been in remission.

She was recently recognized in an issue of Bowler's Journal International as one of 11 female seniors to make the national list of high school prospects for 2009-10 school year.

Suzann Anderson, 51, Alexa's mother said, "Getting her properly diagnosed was a major breakthrough in determining what Alexa actually had."

Suzann Anderson adds, that her daughter's prognosis was confirmed months after she had been tested by her pediatrician as negative for rheumatoid factor, which is a blood test that screens for the possibility of adult rheumatoid arthritis developing.

However, with Anderson complaining of her foot hurting, a pediatric orthopedic physician chose to place a cast on it thinking it was a hairline fracture.

When it was time to remove the cast, her foot was even more swollen.

"The doctor had experience with children with juvenile arthritis and he referred us to a pediatric rheumatologist for further treatment as he suspected that was what she may have," Suzann Anderson said.

"Without his knowledge Alexa may have continued to be misdiagnosed, as the blood test for the rheumatoid factor is about 30 percent inaccurate, with false negative results being quite common," she added.

"We have been blessed with the ability to have Pediatric Rheumatologist Dr. Mandel Sher at All Children's Hospital. Unfortunately, this specific medical training does not have an abundance of physicians available," Suzanna Anderson noted.

"Being relatively close to St. Petersburg, Alexa has been able to be treated without having to go out of state, which is common for some," Suzann Anderson said. "Not every state has a pediatric rheumatologist, Florida has four that I know of, locations are at All Children's in St. Petersburg, Shands at the University of Florida in Gainesville and one in Miami."

Depending on the specific condition, the impact on quality of life can be considerable. For example the systemic onset type of juvenile idiopathic arthritis (JIA), about 50 percent of cases develop short stature in adulthood. Overall, about 30 percent of people with JIA have significant functional limitations 10 or more years after onset, according to the Centers for Disease Control (CDC).

"It can be difficult to manage the joint aches/pains, joint swelling, morning stiffness, fatigue, lack of concentration someone with my condition can have," Alexa Anderson said. "I have tried to make 'lemonade from my lemons' because dealing with the condition can negatively impact your everyday life if you let it."

Anderson said a normal active day in the past has affected her to where she had to spend up to five days on bed rest due to pain and fatigue. With persistent symptoms, she said working with schools and teachers has had its ups and downs.

Childhood arthritis is the number one cause of acquired disability in children.

It is also the sixth most common childhood disease, following asthma, congenital heart disease, cerebral palsy, diabetes and epilepsy, according to the Childhood Arthritis and Rheumatology Alliance.

The Arthritis Foundation estimates one in 250 children under age 18 have been diagnosed with arthritis or another rheumatologic condition.

Roughly 300,000 children in the United States suffer from some form of arthritis or rheumatic disease, according to the Arthritis Foundation.

Juvenile arthritis refers to any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age.

Anderson, the Arthritis Foundation's Florida Chapter and their supporters took their message to Gov. Governor Charlie Crist and state Legislative leaders in April.

Dressed in tie-dye, carrying protest signs and passing out flowers, they want people to know that kids get arthritis and they are fighting not only daily pain and joint stiffness but for a cure and better access to health care.

Current advocacy priorities discussed include lack of specialty care for juvenile arthritis. A 75 percent increase is needed from the 250 pediatric rheumatologists nationwide to meet the needs of the more than 300,000 children currently diagnosed with a form of arthritis.

Overall, juvenile arthritis occurs more frequently in girls than boys. Family studies also suggest an increased risk for certain genetic make-ups, according to the CDC.

The incidence rates vary by place, even in one area, rates vary over time. These facts suggest an environmental component to the occurrence of juvenile arthritis, according to the CDC.

However, many questions about these diseases remain unanswered, such as: What are the best treatments? How did the diseases start? What are the long-term outcomes? How can damage be avoided?

Study data shows that children diagnosed with arthritis and other rheumatologic conditions account for approximately 827,000 doctor visits each year, including an average of 83,000 emergency department room visits.

Many other medical problems can cause symptoms similar to those of juvenile arthritis, including systemic lupus erythematosus, Lyme disease, rheumatic fever, infections, sarcoidosis, juvenile psoriatic arthritis, vasculitide or inflammatory bowel disease.

Treatment

Dr. Melissa Elder, a pediatric rheumatologist and immunologist, who is an associate professor and chief of immunology, rheumatology and infectious diseases at the University of Florida, said the most common rheumatic disease in children is juvenile idiopathic arthritis (JIA).

Most children do not have a positive rheumatoid factor or what people know as rheumatoid arthritis, she added.

The rheumatoid factor, a blood test, is positive in less than 10 percent of children with juvenile arthritis, she noted.

The most common form of JIA is pauci-articular JIA which affects four joints or less, mostly knees, ankles or wrists. Another form is systemic onset JIA, which affects girls and boys equally and can cause high, spiking fevers of 103 degrees or higher, lasting for weeks or even months, Elder added.

"Pauci-articular JIA primarily affects children 1 to 6 years old," Elder said, "and girls more frequently than boys, it is often outgrown by adolescence."

The occurrence of eye inflammation can be the most difficult aspect to treat in children with pauci-articular JIA, Elder added.

Elder said that chemo-therapy drugs and other biologics have been very effective in treating JIA.

Children are having much better and improved results of recovery in the past decade as a result of the current recommended drug therapies for JIA, but the complications and side effects associated with the drugs can be hard on kids.

"Systemic onset JIA can affect heart, liver and lung functions, can also cause anemia, and its treatment may lead to infections, growth retardation and other problems," Elder adds.

Early diagnosis and treatment gives children with JIA the best opportunity for a good outcome, the goals of any treatment program are to control inflammation, relieve pain, prevent joint damage and maximize ability to do every day things, she added.

Daily Life

According to the Arthritis Foundation, having arthritis can be a life-altering experience, but efforts should be made to maintain as many of a child's daily routines and comforting habits as possible, trying to minimize the potential and natural emotional effects of the child's diagnosis.

"One of my most difficult times in grade school occurred in fourth grade," Anderson said. "It is hard for schools that have only one student with this condition and trying to accommodate them."

"Many times I felt isolated, as I was the only student in my school with this condition," Anderson said.

"Not being able to ride a bike, take recess, or participate in gym class, separated me from other kids," Anderson said. "I had to give up dancing as it became too difficult to manage even with special shoes and accommodations."

Accommodations for children with this condition can include needing assistance with doors, loss of dexterity and strength due to pain and weakness in the joints that prevents the child from doing everyday tasks.

The child may feel angry or sad about having arthritis. In addition, parents, siblings and other family members also have emotional reactions to the disease and its effect on the family.

"The most invaluable tool for our family has been the Arthritis Foundation's camps and conventions for children," Suzann Anderson said.

"Alexa was able to meet other kids like her. Being able to make friends with others that have similar circumstances, kids helping kids relate and cope with this condition adds to the therapy."

Activities, Sports, Exercise

Recreational activities help your child exercise joints and muscles, develop important social skills, and have fun, according to the Arthritis Foundation.

"I was encouraged to start bowling, as there are ramps that can be used for kids with arthritis, to aim and roll the ball down the lane," Anderson said, adding the time spent with teammates and friends has allowed her to overcome some of the isolation that the condition made her feel in the beginning.

Patients should remember that recreational activities do not take the place of therapeutic exercise. Participating in sports and recreational activities help children with arthritis develop confidence in their physical abilities, according to the Arthritis Foundation.

The foundation encourages activities such as swimming and bike riding that exercise the joints and muscles without putting too much weight-bearing stress on the joints.

"I feel really blessed. Perseverance and determination has brought me to this point and I am excited for the future," Anderson said. "There is not a definite answer whether or not I have outgrown this condition, at this time."

Anderson's favorite Bible verse is James 1, verses 2-4, "Consider it pure joy whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."

"Having faith, means hope for tomorrow," Anderson said. "Arthritis does not define a child; there are options and resources out there to help."

Every May there is an Arthritis Walk. Anderson's team has been among the top fundraisers each year.

"After all the Arthritis Foundation has done for me, I look forward to giving back every chance I get." Anderson said. "It is important to me that those services and supports are available to other children."