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.

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

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.

Traveling with JM

Planning a trip or vacation can be challenging, especially when you have a child with juvenile myositis. With spring break and summer break just around the corner, the pressure might be even greater. However, at Cure JM, we want to help ensure that you and your child can enjoy all the delights of a vacation with minimal stress.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

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

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