He’s the face of arthritis — for kids

As he jumps and scuttles with lightning swiftness from a sofa to a table and the floor, Manuél Butch Cruz doesn't exactly evoke the common perception of disease. The 7-year-old's frenetic energy belies the often-intense pain of his juvenile rheumatoid arthritis. But Manuél has learned to take the discomfort, and the disease itself, in stride.

"It hurts a little but not that much," Manuél said with a shrug. "I learned to deal with it."

Manuél, who was diagnosed as a baby, has been chosen as a youth honoree for this year's Arthritis Walk, held by the Long Island Chapter of the Arthritis Foundation. The 5K walk will take place 11 a.m. Saturday at Belmont Lake State Park.

Juvenile rheumatoid arthritis is an autoimmune disease that causes joints to become swollen and painful, said Manuél's doctor Beth Gottlieb, a pediatric rheumatologist at Cohen Children's Medical Center in New Hyde Park. Mild discomfort is treated with over-the-counter anti-inflammatory drugs, she said, but more serious pain is treated with other medicines, including Methotrexate, a form of chemotherapy that is given in low doses.

There are more than 300,000 children with the disease in the United States, Gottlieb said. Manuél, of Shirley, was fortunate, she said, because he was diagnosed at about six months, early enough to avoid serious damage to his joints.

In addition to many other procedures, from age 2 to 5, Manuél had to receive two injections of immune-suppressing medication each week. The drugs had side effects, from nausea and fatigue to a yearlong fever that rarely dipped below 103 degrees. Manuél is currently taking over-the-counter pain relievers for occasional flare-ups but because he suffers from an autoimmune disease, his mother, Helen Diaz-Cruz, 44, constantly frets over every cough and sneeze.

"He's accepted his disease, he knows his limitations," she said of her son, who is in the first grade at Charles E. Walters Elementary. "But we don't stop him from being an average little boy."

Still, there are times when Manuél is too tired to run and days when his joints can't handle playing out in the snow. "It's hard, but not that hard," he said.

Pat McAsey, president of local chapter of the Arthritis Foundation, said there is a misconception that arthritis is an "old people" disease even though there are 3,000 children suffering from the disease on Long Island.

"Manuél represents a very hopeful picture for the future," he said. "He can provide a real face to the disease."

Manuél, who declared at age 2 that he wants to be a paleontologist when he grows up, has named his walking group Team Dino. The 10-person team, including dad Dennis, 34, hopes to raise more than $6,000.

Manuél is excited about the walk. In addition to hoping he will collect bugs along the way and maybe even find a salamander to keep as a pet, he wants to raise money. But, he said emphatically, it's not for himself.

"I already know how to deal with it but the other boys and girls don't. That's why I want to give it to them instead," he said.

Facts on juvenile rheumatoid arthritis

WHAT IT IS. Juvenile rheumatoid arthritis, or JRA, is the most common type of arthritis in children younger than 16. It affects about 50,000 children, causing persistent joint pain, swelling and stiffness. Some children experience symptoms for only a few months, while others have symptoms that endure for years.

CAUSES. Doctors believe JRA is an autoimmune disorder - the body's immune system attacks its own cells and tissues. Why it happens is unknown, but heredity and environment seem to play a role.

TREATMENT. Doctors can prescribe a number of drugs, including nonsteroidal anti-inflammatories (NSAIDS) and corticosteroids, such as prednisone. Doctors can also recommend physical therapy and lifestyle changes, including regular exercises and dietary changes.

PROGNOSIS. JRA is rarely life- threatening. Many patients eventually go into remission with very little loss of body function.

- J. STEPHEN SMITH

SOURCE: MAYO CLINIC