Children Suffer Arthritis in Silence

Finding Someone to Tell

As debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.

But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him.

"Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."

Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.

While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment.

"Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."

Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition.

"Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."

Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her.

"With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."

While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child.

"In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."

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