For kids managing a rheumatic disease, school can be a frustrating cycle of missed lessons and makeup work. While a 504 Plan for special accommodations can certainly help, families living with pediatric rheumatic diseases know that school-related challenges are inevitable.

There is very little evidence about the burden of school-related issues and the exact barriers that kids with pediatric rheumatic diseases face.

Mia Chandler, M.D, M.P.H, a pediatric rheumatologist at Boston Children’s Hospital, aims to change that. Last year, Dr. Chandler won a CARRA-Arthritis Foundation Career Development Award to support her research into Juvenile Idiopathic Arthritis and School-Related Concerns. Her research will assess the burden of school-related concerns – beyond physical and academic challenges to include social and psychological issues.

Learn more about her important research and the challenges that kids face at school in this special episode of the CARRA Podcast.

This episode focuses on scleroderma, a disease that the host of the CARRA Podcast was diagnosed with at nine years old. To help explain what the disease is all about, we turn to Dr. Kathryn Torok, Associate Professor of Pediatrics and Clinical and Translational Science. Dr. Torok is the director of the Pediatric Scleroderma Clinic at UPMC Children's Hospital of Pittsburgh, where she is also the co-director of the Pediatric Craniofacial Scleroderma Clinic.

Dr. Torok explains the different types of scleroderma and how doctors diagnose them, as well as the possible treatment options and the challenges that patients and physicians face with this rare disease. As a leading researcher in pediatric scleroderma who co-leads CARRA's Scleroderma Workgroup, Dr. Torok also shares the latest exciting updates in her scleroderma research.

Have you ever wondered what it’s like to be a kid with a rare autoimmune disease?

In this special episode, the host of The CARRA Podcast, who is a teenager living with a rare autoimmune disease, interviews another teenager who has a rare autoimmune disease about their experiences with school, sports, friends, and medical treatments. They also share their frustrations, hopes and new perspectives on life.

Spencer Ableman shares his journey with vasculitis, from a terrifying and unexpected health crisis to accepting this tough diagnosis and learning to embrace life with new challenges. Spencer, who has an incredibly optimistic outlook, has a story that is both informative and uplifting.

Spencer shares his experiences on everything from competing in a cross-country race with a port in his chest to explaining his condition to other teenagers. It hasn’t been an easy path, but he has found some silver linings – from having insider knowledge in his AP Bio class to seeing his friends waiting at the finish line of his first cross-country race.

“Even though it may seem like you're in the dark there's a light at the end of the tunnel and you just got to keep your head up if you want to see it,” says Spencer.

These two remarkable teens, who met at CARRA’s Annual Scientific Meeting, discuss what research means to them and why they are involved with CARRA.