Emotional and Mental Health Resources for Experienced Parents and Caregivers

You have been on the JM journey for more than a year, possibly much longer, and you are looking for help with your 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, feeling suicidal, and other mental health events are likely around 30% for pediatric rheumatic diseases. These rates may be more than double than the general population.” 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 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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“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 the needed help. Kudos to Cure JM for developing a position for a new Mental Health Coordinator to provide and develop more resources for this!”

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.

Alex Hackney’s Story

Despite battling juvenile dermatomyositis (JDM) as a child, Alex Hackney never envisioned becoming a marathon runner, let alone completing prestigious races like the Chicago and New York Marathons. With over 15 years of grappling with JDM, Alex recently completing her third marathon and found closure and perspective in Chicago.

Sydney’s Story

Spring break should be about fun and relaxation. Sandi and her husband Zack expected their trip to Mexico would be the same. Of course, taking

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