Tag Archives: JIA

isabella soler header

JA Mom: “I Know Just Enough to Know I Don’t Know Enough.”

Among patient partners who reviewedArthritis by the Numbers– a collection of verified arthritis facts and figures – was the Soler family of Georgia. Robin Soler has been active with the Arthritis Foundation ever since her younger daughter, Isabela, was diagnosed withjuvenile idiopathic arthritis (JIA).当时,她是该州12个月大就被诊断为JIA的最小的孩子之一。

Over the past 15 years, mother and daughter have seen about 50 different doctors and scores of other medical experts. Isabela has taken at least 20 different types of prescription drugs – consuming more than 15,000 pills in her lifetime, not including antibiotics and other normal childhood drugs. She has missed countless parties and playdates, and one recent semester had to skip 7thperiod 21 times for doctor’s appointments.

Isabela’s mother, Robin, is a developmental psychologist and senior scientist at the Centers for Disease Control and Prevention in Atlanta. Robin has had her own personal experience with arthritis, diagnosed withfibromyalgiawhen she was 26, though herchronic paingoes back to her mid-teens.

After reviewing arthritis statistics we’ve collected, Robin’s main takeaway: “I am happy to know there is information out there, but I’m concerned about the pictures the numbers paint for parents. We and our children need to be hopeful.”

Continue readingJA Mom: “I Know Just Enough to Know I Don’t Know Enough.”

charcandrick west

Unstoppable: Charcandrick West’s Story

Charcandrick West hasjuvenile arthritis.现在他在橄榄球联盟中躲避拦截。

It’s a scene fans of the Kansas City Chiefs football team know well: Charcandrick West crashes into a tackler, spins and breaks free, then shifts into high gear as he races downfield. Yet Charcandrick, now in his fourth season as a running back for the Chiefs, never forgets that he has faced a more challenging opponent:systemic juvenile idiopathic arthritis (sJIA).它在14岁时出现,症状变得如此严重,以至于一位医生预测这个青少年可能再也不能走路了,更不用说踢足球了。

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allison alberts jia wisconsin youth jbr honoree

Champion of Yes: A Three Sport Athlete, Allison Alberts Charges Forward Through Arthritis Pain

对威斯康星州斯特金湾17岁的艾莉森·阿尔伯特来说,每天醒来都感到疼痛。有些时候疼痛是可以控制的,可以通过洗个热水澡或跑个步来放松她的身体。Other days, Allison might struggle to get out of bed and looks to her father, Jamie, to help her walk or give her joints acomforting massage

“There are many days I wish I could be normal, let alone feel normal for a day – a day without any pain, “says Allison. “But complaining does nothing. Complaining won’t take away the pain and complaining won’t allow my fingers to look normal. The way I go about my day is to let my arthritis and my body know that they will not stop me.”

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Polyarticular JIA story

Iowa Teen with Arthritis is an Ace on and Off the Tennis Court

You would never know by watching Kyle Elmore’s backhand shot that the 14-year-old athlete from Iowa has polyarticularjuvenile idiopathic arthritis(JIA). Kyle was diagnosed with JIA two years ago, but he decided that he was not going to let arthritis stop him from doing what he loves.

埃尔默一家的诊断之旅漫长而令人沮丧。凯尔说:“我记得我的膝盖和脚踝痛得厉害,尤其是在早上。”“我的膝盖肿得都看不见我的膝盖骨了!”
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Kristen McAllister Juvenile Arthritis

More than Just Aches and Pains – Kmac Fights her Biggest Battle with Arthritis Yet

152. That’s the number of days Kristen McAllister, also known as Kmac, spent in the hospital in 2015. That’s 152 days out of school, away from friends and way out of her comfort zone. But, 152 days represents a mere fraction of the battle Kristen, now 21 years old, has been fighting since she was child.

年仅10岁的克里斯汀就接受了她的第一次手术,从她的膝盖和手上切除了类风湿结节。到11岁时,克里斯汀已经有了几处关节疼痛,经常感到疲劳,还伴有不明原因的发烧。三个月的抗生素疗程似乎暂时缓解了她的症状。

“Kristen was doing so well for awhile that she made the middle school dance team as a rising sixth grader,” recalls Michele McAllister, Kristen’s mother. “We assumed her middle and high school years would always include dance team, competitive cheerleading, church activities and school clubs. But we were wrong.”

Another knee surgery relieved much of Kristen’s pain, but the fevers, joint aches and extreme fatigue returned. Like it is for many children, the road to diagnosis was a long and winding one.
Continue readingMore than Just Aches and Pains – Kmac Fights her Biggest Battle with Arthritis Yet

Miss Teen Minnesota- Nicole Doyle

From Methotrexate to Miss Teen Minnesota: Nicole Finds Strength In Doing What She Loves

Miss Teen Minnesota- Juvenile ArthritisCall it mother’s intuition. When Nicole Doyle woke up one morning with an unexpectedly swollen, hot and painful finger, her mother knew something was wrong. Even though Nicole’s pediatrician initially dismissed the thumb mystery as an injury caused by play, Nicole’s mom kept pressing for answers.

现年18岁的妮可回忆说:“我们看了一个又一个医生,最后去看了一个成人风湿病医生,因为整个美国只有大约250名儿科风湿病医生。”“作为一个三岁的孩子,我不想呆在那里,让他们检查我。我只想回家和我弟弟玩。”

妮可去看成人风湿病专家是她永远不会忘记的一天。

Continue readingFrom Methotrexate to Miss Teen Minnesota: Nicole Finds Strength In Doing What She Loves

Juvenile Idiopathic Arthritis (JIA) Patient Story

A Long Wait for Answers with JIA

“I’ll never forget one night when she was crying in pain and rocking back and forth in her little rocking chair and said, ‘God, why won’t you help me? Mama, please help me!’”

Amanda Vizier, of Jackson, Miss., endured an eight-month nightmare trying to find a correct diagnosis and treatment for her daughter, Chloe, now 8 years old.

On Chloe’s sixth birthday, in 2010, she developed a rash. The doctor said it was probably some virus, and not to worry about it.

Within a couple of days, she started running a fever and we went back to the doctor. Chloe was diagnosed with Rocky Mountain spotted fever and went on antibiotics, but they didn’t help. For more than three weeks she had a fever of 104. She developed abdominal pain, she started limping, her rash was itching and she was screaming in pain. She ended up in the hospital for a few days. Over months of testing, doctors ruled out cancer, lupus and even juvenile arthritis. After all, her joints weren’t swollen.

She was diagnosed with strep throat, then with chronic hives. An allergist asked if she was just anxious.
Continue readingA Long Wait for Answers with JIA