Tag Archives: juvenile idiopathic arthritis

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). At the time she was one of the youngest children in the state to be diagnosed with JIA at just 12 months old.

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.”

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Double Take: Twins with RA Fight It Together

Identical twins Annamarie and Ginamarie Russo share many qualities: They look and sound alike, they love acting and traveling – and both haverheumatoid arthritis (RA).

在将近20年的时间里,这对34岁的双胞胎姐妹都不享有风湿性关节炎。Ginamarie was diagnosed with juvenile RA (now calledjuvenile idiopathic arthritis) when she was 12; Annamarie was diagnosed 18 years later, at age 30.

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peyton holstein arthritis foundation giving

A Generation of Giving

Each year as the leaves begin to fall and the weather gets a few degrees cooler, Peyton Holstein of Lake Oswego, Oregon, along with her older brother, Tobias and four of their cousins, begin researching both local and national charity organizations. While it is easy to assume this is for a school assignment, it’s not. Each cousin is readying their pitch for a unique family Thanksgiving tradition.

Approximately eight years ago, Peyton and Tobias’ great uncle Ron began donating to different charities in the six cousins’ names for Christmas. When the kids were younger, he chose a charity and presented each child with the donation made in their name along with an explanation of how their charitable gift will help the organization. One year it was a donation of goats to a village in Africa that would help provide the village with milk and fertilizer for crops and gardens. Another year after the earthquake in Haiti, it was a gift of water and rice to fulfill the basic needs of a devastated community.

As the kids grew older, Uncle Ron asked each of them to find their own cause and research the organization – from an organization’s mission to charity rating, how much per dollar is invested to how they intend to use the donation, and make their pitch at the family Thanksgiving get together. The six cousins, ages 10-24 years old, listen to one another, embark on a discussion, make ballots and vote between themselves. TheArthritis Foundationwas the overwhelming choice for this year’s donation!

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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

For 17-year-old Allison Alberts of Sturgeon Bay, Wisconsin, waking up with pain is an everyday occurrence for her. Some days the pain is manageable and can be helped along by a hot shower or a run to loosen up her body. 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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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.

At just 10 years old, Kristen faced her first surgery to remove rheumatoid nodules from her knee and hand. By the time she turned 11, Kristen had several painful joints, was often fatigued and dealt with unexplained fevers. A three-month course of antibiotics seemed to resolve her symptoms — temporarily.

“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.
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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

Jen Bike Ride to JA Conference

1,400 miles for 300,000 Children : Jen Bikes Down the Coast to Juvenile Arthritis Conference

Jen-bike-for-arthritisLike many people, Jen Horonjeff is traveling this summer. Don’t look for her on any planes or trains, though. Jen is making the trip from New York City to Orlando — all on her bike.

Diagnosed with juvenile idiopathic arthritis (JIA) when she was just 11 months old, Jen is finalizing plans to ride on a tandem bike with her partner from her home in New York City to the Arthritis Foundation’sJuvenile Arthritis Conference在奥兰多。这趟1400多英里的旅程将耗时约17天。

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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.

几天后,她开始发烧,我们又去看了医生。克洛伊被诊断为落基山斑疹热,并服用了抗生素,但它们没有帮助。三周多以来,她的高烧达到了104华氏度。她开始腹痛,开始一瘸一拐,皮疹发痒,疼得尖叫。她在医院住了几天。经过几个月的测试,医生排除了癌症、狼疮甚至幼年关节炎的可能。毕竟,她的关节没有肿。

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