'We just get right back up': Sisters, 10 and 13, explain life with juvenile arthritis

'We just get right back up': Sisters, 10 and 13, explain life with juvenile arthritis

Natalie Tucker says living with juvenile arthritis is pretty much the same as living without it, except she's not scared of needles.

The 13-year-old and her sister Allison, 10, have both lived with the condition for as long as they can remember.

"We're used to what it feels like," Natalie said. "Arthritis makes us fall down, but we just get right back up."

As far as she's concerned, she and Allison can do as much as any other kid can. The only difference is sometimes they have to do it in their own unique way. 

"We have limits, mostly. Like running. We can run for a long time, but we have to take breaks in between," she said.

Liz Tucker, the girls' mom, said the sisters have to explain that a lot.

"It's a strange question, right, because a lot of people ask them 'What is it like?' And especially in our family, both of our children have it, so they don't see the difference," she said.

Faces of childhood arthritis

Natalie and Allison are two of the Arthritis Society's faces of childhood arthritis. They'll be celebrated on Friday at a luncheon in Winnipeg marking childhood arthritis month, March.

Natalie and Allison are among 1,500 infants to young adults living with juvenile arthritis in the province, Arthritis Society statistics say.

"JA affects more children than any other chronic disease — three per 1,000 — or approximately one child in every school," the society's website says.

When Natalie suddenly stopped walking at about age two, her mother had never heard of juvenile arthritis before, she said.

"Her knees were swollen. I have pretty tiny kids as it is, and her knees [were] like a grapefruit or big orange," she said.

"I was like, 'What is going on?'"

After a trip to the doctor confirmed Natalie had juvenile arthritis, Liz Tucker said she was "taken aback."

Doctors told Tucker the condition isn't hereditary, she said, but at 16 months, Allison started limping and was later given the same diagnosis.

Trouble with vaccines

The family has faced some challenges, the girls' mom said. One cropped up when two years ago, Allison had to go off the immunosuppressant drug she'd been taking since infancy so she could be vaccinated for measles after the illness made a comeback.

Without the immunosuppressant, Allison's joints swelled up and she could barely move, her mom said.

"She had to go through a huge process in order to get the vaccine, because of course, there's so many people right now that aren't vaccinating," Tucker said. "It puts a lot of our kids at risk."

Allison said the experience wasn't all bad: she got to watch more TV than usual.

"I found a fun way to eat, too," she said. She described it as pecking like a bird — she used the technique when she couldn't move her arms much.

Her mother remembers it a little differently.

"As a parent, it is very traumatic, and it's very hard," she said, and it's tough to explain to kids their condition isn't going away.

Get support

Natalie and Allison advise other children with juvenile arthritis to reach out.

"Join the family of juvenile arthritis, because we're all a family," Natalie said.

And Tucker's advice for parents?

"Same as the girls," she said. "Utilize the support as well. Get out there."

The annual Faces of Childhood Arthritis Luncheon is scheduled for 11:30 a.m. Friday. The fundraiser supports programs in Manitoba that help families dealing with juvenile arthritis.