Howard teen, family attending arthritis conference in Calif.

July 22, 2004|By Melanie R. Holmes | Melanie R. Holmes,SUN STAFF

Fifteen-year-old Danny Ortman knows from experience what most kids his age don't believe: Arthritis is not a disease reserved for the elderly.

For four years, he has battled juvenile rheumatoid arthritis, a complication of the joints that affects 300,000 children nationwide. Besides crediting prayer and perseverance, Danny is grateful to the American Juvenile Arthritis Organization National Conference for helping him cope with JRA.

"The kids you meet [at the conferences] can relate to you," he said. "They're all nice kids with arthritis. There's so many fun group activities; you get to make a lot of friends."

For more than 10 years, the Maryland chapter of the Arthritis Foundation has helped families attend AJAO national and regional conferences by providing scholarships. The conferences enable families to learn about recent medical breakthroughs, coping and self-management skills and support services.

This year's four-day national conference begins today in San Diego and continues through Sunday. An estimated 300 families and 200 children from across the country will participate, including two families from Howard County. Six families from Maryland will attend.

"A lot of times, the families [of children with arthritis] don't have the opportunity to meet with [similar] families," said J. Karen Krug, vice president of education at the foundation's Maryland chapter. "[The conference] gives the families a chance to share their experiences. ... "

Danny Ortman and his family, residents of Ellicott City, received a $1,000 scholarship from the foundation to help pay for the San Diego conference. The second family from Howard County wished to remain anonymous.

Danny, one of 1,600 children in Maryland with one of the more than 100 types of arthritis, was diagnosed with JRA when he was 11. "We just got back from a family vacation when he started complaining about his knees and ankles hurting," said Danny's father, Michael Ortman.

A few months later, the pain had failed to cease.

"His ankle got really swollen, so we went in for bone scans. They were pretty sure after the bone scans that it was rheumatoid arthritis," said Kate Ortman, Danny's mother.

Danny's right ankle and left knee were so badly affected by the arthritis that he had to rely on a wheelchair. "He used it a lot," Kate said. "His arthritis was so bad that he was having trouble getting out of bed and we had to lift him into his wheelchair. He was in so much pain."

But when he began his self-injected shots of a medication called Enbrel, he started feeling better the next week and has since had to use only crutches or a cane a few times.

"It's phenomenal," Kate Ortman said. "You see older kids in their 20s crippled and deformed, but kids a little younger are healthier because of new medications. When we went to the arthritis conference a year ago, they got [Danny] so excited that he could do something physical."

Four years ago, the JRA forced him to stop horseback riding, a passion of his at the time. Now a green belt in karate, Danny said he doesn't have time for much of anything else.

"Physically, I'd be up for [horseback riding] now, but I'm so busy with karate," Danny said. He anticipates becoming a black belt in 1 1/2 years.

He might, in fact, be what his mother calls "one of the lucky ones." Since taking Enbrel, he has lived the normal life of a teenager.

"A few tendons, if you press on them, will hurt," Danny said. "It's just you don't want to think about the things you can't do, you want to think about the things you can do."

The Maryland branch of the Arthritis Foundation is one of 49 chapters throughout the country and has funded more than $10 million in research in the past five years.

"We haven't always had conferences," Krug said. "The scholarship is just one of the many things we do. We try to have programs for the whole family and send as many people as we have funds for. When the child has arthritis, the whole family is affected."

Information on the Maryland chapter of the Arthritis Foundation: 410 654-6570.

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