When Mariah Aquino-Truss was just five years old, she was in so much pain each day she told her mom, Tory, that she “didn’t want to be here anymore.” Imagine hearing such an admission from your young daughter who was newly diagnosed with a form of juvenile arthritis (JA) known as polyarticular spondyloarthropathy.
Polyarticular spondyloarthropathy is a juvenile form of ankylosing spondylitis, a chronic, long term disease that affects the joints, ligaments, tendons and entheses. Shocked, saddened and ferociously determined to help Mariah and her family, Tory set out to find help – a road that led her to the Arthritis Foundation.
Continue reading A Dream Come True – Meet Our 2017 National Youth Honoree Mariah Aquino-Truss
When you meet Amy McCormick and her daughter, Kylie, of Hauppauge, New York, you instantly feel as though you’ve known them for years. They both consistently greet you with warm smiles and joyful hellos, chatting about their love of Hamilton, the arts and their newly adopted rescue puppy named Autumn.
Continue reading Champions of Yes: Amy and Kylie McCormick Form a Dynamic Duo to Tackle Juvenile Arthritis
Meaghan Victory grew up in an active family that spent their summers camping and hiking, and winters in the snowy mountains next to their Issaquah, Washington home.
When she was around eight years old, Meaghan was involved in a sledding accident and sprained her right wrist. For six months after the accident, the pain in her wrist never went away. While on vacation in the summer, her mother was putting sunscreen on her arm and noticed Meaghan in significant pain. Unsure of what was going on, her pediatrician referred Meaghan to Seattle Children’s Hospital where she was diagnosed with juvenile rheumatoid arthritis at the young age of nine years old.
Continue reading Champion of Yes: Meaghan Victory Uses Patient Experience to Propel Nursing Career Dreams
The saying goes that it takes a village to raise a child. Chrissy Rose had always known that statement was true, but when her toddler son, Carson, was diagnosed with juvenile arthritis (JA) at 15 months, she felt it even more acutely.
“We hardly understood that our child could have arthritis, let alone knew anyone else who was dealing with it,” recalls Chrissy. “We were a little lost.”
After moving from Ohio to Indiana far away from most of their family and friends, the Roses connected with their local Arthritis Foundation in Indianapolis. While they formed a small team for their first event– the Indy Walk to Cure Arthritis — they found inspiration to expand their team and fundraising efforts for the next year’s walk.
Continue reading Expanding their Village: Carson and the Arthritis Foundation
Like a lot of three year olds, Carson is still working on his “th” sound,” so it should come as no surprise that when he talks about arthritis, it sounds more like “arfritis.” What is surprising is that he has to talk about arthritis at all.
Diagnosed with juvenile arthritis (JA) when he was just 15 months old, Carson is just one of nearly 300,000 children who have JA. Carson’s arthritis is polyarticular, which means it affects five or more joints. While Carson initially struggled mostly in his knees, he also has limited mobility and increased pain in his wrists. While you’d think that pain would be a clear indicator of arthritis, for Carson and thousands of other children, getting a diagnosis was not that simple. The myth that arthritis is only for older people persists.
Continue reading When Being a Child Hurts: Even Medicine Can’t Make it All Better
By most accounts, Carson is a typical three-year-old boy. His room is decorated with superheroes. He can’t get enough of the Teenage Mutant Ninja Turtles. He’s counting down to his fourth birthday. He loves to color. Trucks and dinosaurs are frequent playmates. But there’s one way — and it’s a big one — that Carson isn’t typical at all. He has juvenile arthritis (JA).
Though it took several months, Carson received his official diagnosis of polyarticular juvenile arthritis, meaning it affects five or more joints, when he was just 15 months old. His mother, Chrissy, suspects he had been in pain for much longer.
Continue reading Meet Carson Rose: Redefining Normal & Turning a New Reality Into Yes
Call 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.
“We went to doctor after doctor, eventually ending up at an adult rheumatologist due to the fact that only about 250 pediatric rheumatologists exist in the entire United States,” recalls Nicole, now 18 years old. “As a three year old, I did not want to be there and have them examining me. I just wanted to go back home and play with my brother.”
Nicole’s visit with the adult rheumatologist is a day she will never forget.
Continue reading From Methotrexate to Miss Teen Minnesota: Nicole Finds Strength In Doing What She Loves
Ana Villafañe has come a long way since she first belted out the Gloria Estefan song, “Reach” at the Arthritis Foundation’s juvenile arthritis camp, Camp Funrise, in Miami, Fla., at the age of 9. The rising star, now 26, is portraying Estefan in a new Broadway musical, “On Your Feet!” about the legendary singer’s life. If that weren’t enough, she’s also appearing in the summer movie, “Max Steel,” as well as the new Hulu series, “South Beach.”
Her mother, Carmen Villafañe, never anticipated such success when Ana battled her first systemic onset of life-threatening symptoms at age seven. “She had a fever of unknown origin, as high as 106, 107 degrees, consistently, for a month-and-a-half,” she says. “She also contracted secondary issues; her organs were shutting down. Finally, her rheumatologist Dr. Rafael Rivas-Chacon told me, ‘If you ever see a swollen joint, call me immediately.’ The day we were leaving the hospital, Ana said, ‘Mom, look at my knee,” and sure enough, it had blown up. Dr. Rivas-Chacon was back in ten minutes. That’s how she was finally diagnosed.”
Continue reading Ana Villafañe- “JA Doesn’t Define Me”
“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 reading A Long Wait for Answers with JIA