Juvenile arthritis an oft unknown, unseen affliction

By Heather Ruenz

SLN staff

Just prior to her 10th birthday, Amelia Detlor began complaining – on and off – about her wrist and thumb hurting.

“I didn’t think too much of it at first but when I went to hold her hand one day and she said, ‘Not that one,’ and pulled it away, I knew something wasn’t right,” Amelia’s mom, Julie said.

Amelia Detlor, 12, Elkhorn, has juvenile arthritis, which affects 300,000 children in the United States. She gets two shots of injectable medication each week to help with the pain. Top; Her family has put its support behind raising awareness including selling bracelets her mom, Julie, makes and an online auction Julie runs to raise funds for the Arthritis Foundation. The auction opened for bidding Nov. 1.

A trip to the doctor included blood being drawn and a positive result in an Antinuclear Antibodies test. Referred to as an ANA test, it looks for autoimmune diseases such as lupus or rheumatoid arthritis though the test itself doesn’t indicate the presence of an autoimmune disease.

“We were sent to an orthopedic doctor who did x-rays and they looked fine. But he compared her wrists and saw very minor swelling in one so referred us to rheumatology,” Julie explained.

The Detlor family, originally from Canada, was living in Madison, Alabama, at the time so were referred to Vanderbilt where Amelia was eventually prescribed an injectable medication.

“It didn’t work and her hips, knees and ankles started hurting so she was switched to another medicine, Enbrel, which is also injectable,” Julie said. “It’s very expensive, like $36,000 a year, so thank God for insurance.”

Every Friday, Julie gives two shots to Amelia, who is now 12 and a seventh grade student at Elkhorn Area Middle School.

“Some kids flip out over a flu shot and she gets 104 shots a year,” Julie said.

The medicine suppresses Amelia’s immune system to keep the inflammation to a minimum, which reduces pain and stiffness in her joints.

She said kids don’t always understand – or believe – the pain Amelia deals with because it’s not visible. Though it would be understandable if her brother, Ryan, who is 14, felt cheated in some way, Julie said that’s never been the case.

“Ryan’s great. He just does his own thing, his small engine repair work. He’s had the business since he was 11,” she said. “It was funny because people would come by and ask him if his dad was around, thinking it was his dad’s business.”

Amelia has also taken her diagnosis well, Julie said.

“She’s a normal kid. She loves her cats, loves to draw and loves The Office,” she said.

Juvenile arthritis is not common but Amelia and Julie have made connections at JA Family Day events.

“Shot night comes around and well, everybody gets shots. Amelia’s gone three times and really liked it,” Julie said.

For more information about JA events visit kidsgetarthritistoo.org.

Knock on wood

“They’re very aggressive treating kids with arthritis because think about it – you need your hips to work for a long time,” Julie said. “Once you have joint damage you have to replace it.”

She said the current medication Amelia is on has made a noticeable difference in her daughter and though there are a lot of potential side effects, she hasn’t had any yet.

“They’re saying this generation is lucky because treatments are so much better now,” Julie said.

In addition to checkups with a pediatric rheumatologist at Children’s Hospital every three months, Amelia sees an eye specialist because of uveitis, the most common eye problem that can develop in children with arthritis.

Uveitis is concerning, Julie said, because it can be present without symptoms and can lead to blindness.

Amelia has no limits physically as long as it’s not causing her pain, and she’s allowed to self-regulate in gym class at school.

“If she can’t do what the class is doing she’ll do another activity,” Julie said.

Helping others

Since Amelia’s diagnosis, the Detlor family, including dad, Perry, has been on a mission to help others who are battling arthritis.

“I can’t fix Amelia but I can fundraise,” Julie said.

The family is involved in several fundraisers that support the Arthritis Foundation, including an online auction Julie has run for years. It features a variety of donated items and last year raised more than $12,000.

“The neat thing about the auction site is people can donate there without bidding on items. I’m also able to link to businesses that are donors and that’s good for them,” Julie said.

The auction is at 32auctions.com/letscurearthritis – bidding opened Nov. 1 and closes at 11 p.m., Nov. 10.

The Jingle Bell Run 5K is another fundraiser the family is involved with. It will be Dec. 1 at 9:30 a.m. at Franklin High School. To make a donation or join the Detlor family team, visit events.arthritis.org/team/juliedetlor.

“We are new to the area and would love to grow our team of runners,” she said.

Julie also created a display featuring photos of Amelia and statistics about arthritis that she takes to events to raise awareness – and money. At the events, she sells Amelia’s Kitty Cat Crew Wish Bracelets, donating 100 percent of the profits to the Arthritis Foundation.

To follow Amelia’s journey like Amelia’s Kitty Cat Crew on Facebook.

 

 
 

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