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