This 10-year-old boy from Ohio won’t let arthritis stop him from having fun, because he knows he can handle it.
Even when his juvenile arthritis is acting up and his joints hurt, Greyson Chess just keeps plugging away and rarely complains about his pain. An avid soccer player and skier, this active 10-year-old also enjoys lacrosse, basketball, snowboarding and going to the beach. During spring break earlier this year, he got to travel with his parents and two sisters, Ava and Piper, to Costa Rica. Continue reading Greyson Chess Keeps Plugging Away→
Dr. Andrea Knight, lead investigator, will present “Engaging Patients and Parents to Improve Mental Health for Youth With Rheumatologic Disease” at the 13th International Congress on Systemic Lupus Erythematosus in San Francisco, April 5-8. The results of this study will also appear in the April 2019 issue of Lupus Science & Medicine. Continue reading Improving Mental Health for Kids With Juvenile Arthritis→
Personalized treatments for children with arthritis will soon be a reality, thanks to a new research study supported by the Arthritis Foundation.
The study, the largest of its kind, is being done by the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a North American research network that conducts collaborative research to find treatments and a cure for pediatric rheumatic diseases. The Arthritis Foundation has worked closely with CARRA since it was formed in 2002. Together, we’ve aligned our scientific agendas, and the Foundation has committed millions of dollars toward expanding juvenile arthritis research through CARRA.
When Shannan O’hara-Levi was only 7 months old, her mother noticed that she would wake up from naps crying and grabbing at her knees. Mrs. O’hara took her to the doctor, only to be brushed off and told it was just “growing pains” that would eventually go away. Ironically, a few years later at a routine checkup, the pediatrician asked Mrs. O’hara why Shannan wasn’t brought in earlier for her red, swollen knees. That’s when Shannan was finally diagnosed with juvenile arthritis (JA). Continue reading No One Should Be in Debilitating Pain, Especially at 3 Years Old→
Going off to college can be a tough transition for anyone. But if you’re a teen with arthritis, starting college can pose unique challenges: leaving behind family and friends who understand and support your health needs, navigating campus on foot when every step causes pain, watching roommates go out at night when you need sleep just to function and feeling like you’re the only young person in the world with a disease associated with old age.
Rachel Mershon and Caroline Bailey know the feeling all too well. Diagnosed with arthritis at age 14, Mershon left home for the first time two years ago to pursue a degree in nutrition at Cal Poly, San Luis Obispo. Bailey was diagnosed with ankylosing spondylitis just months before the start of her freshman year at the University of Mississippi. Both young women say the transition to college life was a difficult – and lonely at times.
The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) consortium was selected to receive a 2-year grant to implement a Pediatric rheumatology Learning Health System (LHS) that will work with networks in the Patient-Centered Outcomes Research Institute (PCORI) PCORnet Learning Healthcare System Collaborative.
The PARTNERS Pediatric LHS will provide support for patients with juvenile idiopathic arthritis (JIA) and their families to actively engage in care and self-management activities. JIA is a rare disease, making it difficult to study. Currently there is no cure for JIA. Recent advances in drug development have resulted in many therapies, including biologics. However, there remain many unanswered questions about how to use available therapies. While early diagnosis and initiation of treatment have proven to improve outcomes, variation exists in treatment patterns across providers, medical centers, and geographic locations.
We recently gave approximately $160,000 toward childhood arthritis research in the form of research grants. The grants are funded through the Childhood Arthritis and Rheumatology Research Alliance (CARRA); small grants were given to pediatric rheumatologists and fellows small grant research awards were given to third year fellowship students.
“Why did my child get arthritis?” This parent-driven question is at the heart of Dr. Jim Jarvis’s juvenile idiopathic arthritis (JIA) Arthritis Foundation-funded project, “Interplay between genetics and epigenetics in polyarticular JIA”.
“This is less about an illness driven by inherited genes and more about how the environment affects gene expression,” explained Dr. Jarvis. “It’s been shown that only about 30 percent of the risk for developing JIA can be attributed to gene variations.”
Champion of Yes has come to mean different things to different people. To many, it means refusing to let arthritis win – to stand up, push back and say, “Enough is enough. I won’t let arthritis stop me or anyone else from living life to its fullest!”
Dr. Rae Yeung believes in collaboration and building networks to solve problems. Her current 3-year Arthritis Foundation-funded project, “Precision Decisions to STOP JIA”, is an example of that. The goal is to develop a tool that will predict treatment response to specific drugs. Dr. Yeung’s study focuses on a group of high-risk children with polyarthritis, one of the most severe forms of childhood arthritis that affects many joints and is difficult to treat. Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Rae Yeung→