Emotional and Mental Health Resources: Experienced Parents and Caregivers

You have been on the JM journey now for more than a year, possibly much longer, and you are looking for help with yours, or your child’s emotional and mental health needs. Do you know the warning signs of depression and anxiety? Has your child had a mental/emotional health assessment? Here are some resources for you, your child, and other family members.

At the American College of Rheumatology conference presentation in 2020, Pediatric Rheumatologist Dr. Tamar Rubinstein estimated that, “…anxiety, depression, suicidality and other mental health events are likely around 30% for pediatric rheumatic diseases… These rates may be as much as double or more of what the general population are.” 1

We also conducted focus groups on parent perspectives of our children’s mental health at our 2018 national family conference, the results of which were published in the Arthritis Care & Research Journal in January of 2021. The conclusion states: “JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.” 2

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Susan Kim, MD, MMSc
Pediatric Rheumatologist and Associate Clinical Professor of Pediatrics at UCSF Medical School, sees patients in the Rheumatology Clinics at UCSF Benioff Children’s Hospitals San Francisco and Oakland sites

“As a Pediatric Rheumatologist, I know that emotional and mental health are important to optimize overall health, and integral in chronic conditions like JM. If you have concerns about your child’s emotional health that haven’t been addressed, please let your provider know so you can work together to get whatever help is needed. Kudos to Cure JM for developing a position for a new Mental Health Coordinator to provide and develop more resources for this!”

Doctor and young juvenile myositis patient.

What is Juvenile Myositis?

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

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Cure JM supports families, patients, and the juvenile myositis research community.