Arthritis Foundation raises awareness during National Juvenile Arthritis Month

July is National Juvenile Arthritis Month. Nationwide 300,000 children awake to greet the day with pain instead of wonder, awe or even grumpiness over ordinary things like breakfast cereal and going to school.

Sometimes excruciating, pain is what drives them to seek medical advice to it get under control and get them back to managing what children should be concerned about:playing baseball, video games, skateboarding, having lemonade stands, riding their bikes, doing homework.

The Eastern Missouri Chapter of the Arthritis Foundation wants to spread awareness that this devastating and sometimes life-threatening disease affects people of all ages, not just adults. Early detection of the disease is crucial because proper medical care can prevent deformity, impaired use of the joint and long-term effects of the disease. Some children's lives include pain every day if they cannot get it under control. Until an arthritis diagnosis was made, 4,000 Missouri children were in intense and or excruciating pain before taking control of arthritis.

Arthur Petzoldt, 12, of Jackson was diagnosed with juvenile arthritis when he was only 2 years old. When Arthur was 14 months old, his mother, Pam, began to see swelling in his middle finger that enlarged it many times the original size.

"I never thought it was arthritis. My grandmother had that," she said. Disease in Arthur's joints was also making his development challenging.

Arthur Petzoldt, 12, of Jackson was diagnosed with juvenile arthritis when he was 2 years old. (Submitted photo)

"He was particularly sensitive when learning to walk and run. He'd fall and get upset," Pam said. A Jackson kindergarten teacher, Pam knew about the frustrations children go through when they're learning to master a milestone, but that knowledge didn't help as she watched his suffering.

"The hardest part is knowing that your child is hurting and there is nothing you can do and knowing there is no cure," Pam said. "You wake each day not knowing how the day is going to be."

Often Arthur doesn't complain when he is in pain because of the fear of being singled out. Arthur met children like himself in 2003 and 2004, when he attended "Cabin Fever," a weekend retreat sponsored by The Eastern Missouri Chapter of the Arthritis Foundation for children and their families. While promoting a better understanding of the disease, friendships are made between families and individuals who attend the retreat, building support through shared experience.

It took a year for doctors to diagnose Arthur's specific arthritis as polyarticular juvenile rheumatoid arthritis, which means that five or more of his joints were being attacked and inflamed because of the disease. Shortly after diagnosis, in addition to pain in his wrists, knees, ankles, toes and fingers, he developed uveitis -- inflammation of the middle layer of the eye -- a condition responsible for 10 percent of all blindness in the United States. Treatment for Arthur's eyes required steroid injections to make sure he didn't develop glaucoma and cataracts. Eye exams to make sure uveitis doesn't return are scheduled quarterly.

Monthly IV infusions of Remicade help manage inflammation in Arthur's joints and Methotrexate, a cell growth inhibitor used by many cancer patients, help the arthritis from spreading. Relieving pain and managing the disease does not come risk-free. Results of taking Remicade, for Arthur, include migraine headaches, and he periodically stops taking Methotrexate to protect his liver.

Polyarticular juvenile rheumatoid arthritis can begin at any age. Usually the arthritis starts in several joints at the same time. Occasionally it will begin in only one or two joints before spreading to other joints. It is more common in girls than in boys. The duration of polyarticular juvenile arthritis varies from six months to many years. In general, the arthritis runs a course that lasts several years.

On a good day Arthur enjoys playing baseball and other recreational activities most children take for granted. But there are bad days when he can't get out of bed and Pam heats cloth rice bags in the microwave to wrap his joints.

The Arthritis Foundation also sponsors ongoing arthritis exercise, aquatics, self-help and tai chi programs in Cape Girardeau.

For more information or to find out how you can help, contact the chapter at (314) 993-9333 or visit easternmissouri.arthritis.org.

cpagano@semissourian.com

335-6611, extension 133