Young Kids PlayingMental Health Resources for JM Families

Chronic and rare disease is a challenging experience for anyone, and especially difficult on children and adolescents.

According to the 2013 Rare Disease Impact Report, 69% of patients with a rare disease experience depression and 82% of patients experience anxiety and stress.

In order to understand how our families cope with mental health, we collaborated with Andrea Knight MD MSCE, an expert in the autoimmune and mental health fields. We surveyed Cure JM patients and parents on the “Mental Health Needs of JM Patients and Potential Interventions” and found that 28% of JM adolescent and young adult patients reported depression and 33% reported anxiety. These percentages are two to three times higher than the 2016 national average of depression in adolescents (12.8%) and young adults (10.9%), according to the National Institute of Mental Health.


Researchers do not know whether mental health problems in JM are caused by the underlying illness (from inflammation and vasculitis), the treatments, genetics, or the challenge of living with a chronic and rare disease. But, we do know that patients, physicians, and researchers rank mental health as an important research priority for Cure JM.

Cure JM Foundation recommends that mental health assessment and treatment be an integral component of comprehensive care for children, adolescents, and adults with JM, and for patients in remission from JM. To this end, Cure JM Foundation is developing resources to educate physicians and patients about mental health issues in Juvenile Myositis. In addition, Cure JM is developing a plan to help pediatric rheumatologists screen for mental health issues and recommend further evaluation or treatment if warranted.

We’ve also compiled information to help you understand the signs and symptoms of depression and anxiety, and how to get help. Please consult a physician if you have any concerns about your child, yourself, or anyone in your family.