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.

Kids with rheumatic and autoimmune diseases rates are at greater risk of developing anxiety and depression.

In a special two-part series on mental health and mental health awareness, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health issues.

In this second episode on mental health, we explore how researchers are working to provide better support to children and teens living with rheumatic and autoimmune diseases.

The CARRA Podcast host, Claudette Johnson, sits down with Dr. Andrea Knight to learn more about what is being done to help kids cope with mental health challenges. Dr. Knight is a Clinician-Investigator in the Division of Rheumatology and Associate Scientist in the Neurosciences and Mental Health program at The Hospital for Sick Children (SickKids) in Toronto. She is also the Chair of the Systemic Lupus Erythematosus (SLE) Committee for CARRA.

Dr. Knight got interested in mental health early in her career when she saw many teenagers struggling with adjusting to their diagnosis, whether it be arthritis or lupus. Those early experiences shaped her interest in mental health research for kids and teens with pediatric rheumatic diseases.

The initial focus of Dr. Knight’s research was to examine the prevalence of mental health issues among patients, particularly young adolescents with lupus. She wanted to see how common symptoms such as depression, anxiety, and thoughts of self-harm were.

Her findings revealed that these symptoms were quite common among adolescents with lupus, raising concerns about the extent of the issue. This study underscored the need to develop tailored interventions to support adolescents with lupus in managing their mental health.

That first study was about 10 years ago, and Dr. Knight is pleased that things have improved since then.

The CARRA community, rheumatologists, patients and parents, mental health providers, and other researchers are really talking about mental health as an important issue – and that wasn't happening 10 years ago.

One of the things that CARRA as a community has made strides with is doing research into mental health and supporting researchers to really get at the important issues, Dr. Knight explained.

The other thing that's come out of the work of the CARRA community is that they have developed a research agenda for mental health to guide them on how to continue to study mental health with the big goal of improving mental health care for patients and for their families.

Dr. Knight was also involved with a big anonymous survey of patients and their families about mental health called the “Partner Survey.” Researchers partnered with patients and caregivers to help develop the survey and to lead the study alongside the researcher team.

The patient and caregiver voices are really critical not only to lead the research and find out what the problems are, but also to make sure that whatever is being developed is actually going to result in a relevant and significant improvement in the lives of patients and their families.

Dr. Knight also discusses strategies that are being implemented to help young patients cope with mental health issues.

For example, social workers can help with some of the mental health care services, as many of them have training to offer counseling.

Another strategy that people are utilizing is to have psychologists as part of the rheumatology team. Dr. Knight explains this is an excellent approach because the psychologists are able to learn about the common struggles that young patients with rheumatic conditions might be facing, and then help them to deal with them in the context of their rheumatology care.

Listen to the podcast to learn more about these possible solutions to mental health challenges in young patients with rheumatic and autoimmune diseases.