Young people living with old people's pain

[Guest guest]

Young people living with old people's pain: Juvenile arthritis physically

painful but it can be hard on psyches of little ones as well

(May 27, 2006)

http://www.guelphmercury.com/

Olivia Bennings is a seven-year-old who can't run as fast as her classmates

can.

Juvenile rheumatoid arthritis has swollen her left knee to twice its normal

size, turning her run from the quick and eager sprint of other children her

age to an awkward gallop.

When asked how she feels compared to her classmates, the shy Grade 1 student

says, " I feel different. A little bit. "

Olivia's mother, Bennings, says people, especially other kids, don't

associate her daughter's disability with arthritis, a disease normally

associated with older people.

" I don't think any kid in her age group believes it. Arthritis is something

old people get; it's not something young people get. "

But according to the Canadian Arthritis Society, juvenile rheumatoid

arthritis affects one in every 1,000 children under the age of 16.

, who has the same striking red hair that her daughter has, says Olivia

" never complains " about the arthritis that restricts the way she lives her

life.

" I take medicine and I need to do a lot of exercises, and that's pretty much

it, " says Olivia, who was diagnosed at age two.

The Guelph girl has pauciarticular arthritis, which is the " best-case

scenario, " in which only four or fewer joints are affected.

Straightening Olivia's leg in the morning can be an ordeal and she sometimes

wears a brace at night to straighten it.

Simple kid tasks such as drawing with chalk can be challenging, yet the

sidewalk in front of the family's house is covered with Olivia's drawings of

butterflies.

" Just the way she has to have that leg extended all the time is a

disability; it really is, " says.

" But it could be so much worse. "

In addition to the many doctors and physiotherapists she sees, Olivia visits

an ophthalmologist every few months because the disease could also affect

her eyes.

" I don't care if you're old or young; this is not a great disease to have at

any age, " says.

Children not only have to deal with pain, but also with some of the

psychological consequences of arthritis, says Dr. Dent, a pediatric

rheumatologist and head of the division of rheumatology and immunology at

McMaster Children's Hospital in Hamilton.

" If they're really sick . . . they're in a lot of pain. They can't

participate in sports the way they did before they got sick. They can't do

things with their peers and they can't even go to school, " he says.

Dent says little is known about what causes the disease and theories range

from genetic to environmental factors.

Researchers are pursuing a cure, but Dent is guarded in his optimism.

" I don't think there's anything that's going to break tomorrow, " he says.

The good news is children are much more likely to go into permanent

remission than adults are.

About 50 per cent of kids grow out of the disease, he says.

" The biggest burden for adolescents is when they seem different from their

peers. "

Little kids are better " copers. " They don't appreciate they're different

from other children, Dent says.

" Being different is what really hurts. "

Kubinec knows all about being different. He's a 21-year-old trapped

in the body of an adolescent.

He's been living with arthritis since age 11 and the drugs he takes to

combat the illness have stunted his growth.

Socially, it's frustrating, Kubinec says. His body can't handle alcohol and

he isn't going on dates like the rest of his friends are.

" That bothers me. It's sort of frustrating to see everybody else having

girlfriends and going out on dates and still knowing that you are

biologically 14. "

As he talks, he pushes down on his knuckles on the table to try to

straighten out his fingers. It's a nervous fidget, he says.

" I know I'm not emotionally mature because the changes in the brain that go

on during puberty just haven't happened yet. "

The third-year University of Guelph biochemistry student, who lives at home

in Everton, says he has " arthritis in every joint you can count. "

Kubinec has polyarticular juvenile rheumatoid arthritis, which means more

than four joints are affected.

He says he often gets strange looks when he explains he has arthritis. He

also has osteoporosis, another disease associated with aging, caused by the

side-effects of his arthritis drugs.

Kubinec says he's hopeful he will grow out of it, but he's prepared for life

if he doesn't.

" I've been handling the pain for so long that I would have difficulty

imagining it otherwise, " he says.