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Student winning In Vietnam, Tin Nguyen was fed bear meat and blood and "stuff" from a snake, among other traditional remedies dispensed by different doctors for his illness.
battle with arthritis
Thanks to modern medicine,
Arthritis information
Tin Nguyen is able to live
a normal teen's lifeBy Helen Altonn
haltonn@starbulletin.comNo one recognized that he had juvenile rheumatoid arthritis.
"They give me all kinds of medicine, injected me," he said. They also tried acupuncture. "They get all different needles. They put ginger on my skin and burned the ginger."
A slight limp hints at the painful struggle Tin has had with inflammation, damaged joints and other severe consequences of the autoimmune disease.
But after six years of medical and rehabilitation services at Shriners Hospitals for Children, Honolulu, the Kalani High School junior looks like any healthy 18-year-old.
"When he came to us, oh my God, he was one big mess," said Andi Kubota, registered nurse, who was Tin's care coordination manager at Shriners until recently. Kathryn Gray is his present nurse coordinator.
"It intrigued me when Tin shared what they considered medical interventions (in Vietnam)," Kubota said. "It scared me, the kind of things they did. A great part was staying in bed. That is totally against the grain of what we have them do here -- therapy and mild exercise."
Visiting Shriners in a bright red shirt and red baseball cap -- Kalani's colors -- Tin said he began having symptoms of rheumatoid arthritis when he was about 7.
He thought he just had the flu, but his arms and body got weak and he couldn't move, he said.
His father, who owned a bakery in Vietnam, came to Hawaii and cut and sold coconuts to save money to bring his wife and six children here.
Tin arrived in 1996 at age 12. He spoke no English, couldn't walk and was unable to eat because of an inflamed joint in his jaw, Kubota said.
His parents took him to the emergency room at Kapiolani Medical Center for Women and Children. Pediatric rheumatologist David Kurahara took him to intensive care, stabilized him, then transferred him to Shriners for continued medical and rehabilitation services, Kubota said.
Of about 160 patients followed in Shriners' Juvenile Rheumatoid Arthritis Program, she said, Tin was one of the most severe cases.
He was emaciated, malnourished and had significant contractures with chronic flares, she said. (Contractures occur when joints become locked in nonfunctional positions, and flares are acute episodes of swelling and pain.)
Looking at photos of Tin when he was admitted to Shriners, Kubota said: "It's hard to believe he's the same person. His hands were very contracted. His knees were contracted." He always carried a favorite pillow that he used to keep his knees apart, she noted.
"At first they tried to get rid of the pain," Tin said. Then, with exercise and therapy, he said, "I got better."
He had a hip replacement in 1997, and after a year in a wheelchair, he beamed: "I could walk again. I was so happy."
Taking advantage of his new mobility, he began playing basketball. That lasted one week. "We had to pull him back," Kubota said, explaining basketball is discouraged with a replaced hip. He took up weightlifting instead.
When he started at Shriners, his dad was really worried because "he needed total care," Kubota said. "He was in bed all the time. Walking was a huge milestone. His father thought he'd never be at that point again."
"My parents are happy that I can do a lot of stuff for myself," Tin said.
Progress hasn't come easily. He's been hospitalized six times for joint replacements and pain management and therapy for acute flares. "Each time I had a flare, it was worse and worse," Tin said.
His other hip and two knuckles of his right hand were replaced so he could be more functional. "He couldn't hold a pencil or an eating instrument," Kubota said.
Tin still goes to Shriners once a month for clinic visits with a team of specialists and for therapy to increase his mobility.
He is regularly checked by an endocrinologist for osteoporosis and an ophthalmologist for possible eye problems, Gray said. He limps because of a painful knee, and there is talk about surgery at some point, she said.
Meanwhile, medical problems aren't holding Tin back. He took a date to Kalani's winter ball and plans to go to the junior prom in May.
He grinned, blushing, when Kubota and Gray teased him about girls. "It's like he grew up with us," Kubota said. "We tease him that he danced too much."
When he got a moped last year and didn't wear a helmet, she said: "I thought I'd have a heart attack. ... We fixed him all up, and one fall and it would start all over. He wasn't happy, but I was really happy when it was stolen."
Tin has certain goals: to get a driver's license, go to college and take cooking. "I love Chinese food," he said. He loves drawing and would like to learn more about that.
About 285,000 children in the United States have some form of arthritis, which refers to inflammation (swelling and pain) involving the joints. About arthritis
Juvenile arthritis occurs before age 15 and is often chronic, lasting for months or years. Juvenile rheumatoid arthritis is the most common form.
Conditions can range from mild to severe with serious complications, including stiffness, inflammation and contracture of the joints, and weakness in muscles and other soft tissues.
Symptoms vary from one child to another, and there is no single test to diagnose JRA. Treatments also vary according to the type of arthritis or arthritis-related condition.
Source: Arthritis Foundation, Hawaii Branch. For more information, call 942-3636 or 800-462-0743.