Emotional and Mental Health Resources for Parents and Caregivers of Newly Diagnosed Children

As the parent of a newly diagnosed child, you might feel overwhelmed and worried. These are normal reactions. You might want and need support from others who have been, or still are, on this same journey. Support is helpful so you can be a better advocate for your child and learn to manage your feelings.

We know that a chronic illness can bring more heightened feelings, especially depression and anxiety, in yourself and your child. This presentation provides resources for those warning signs and resources for help with them. Additionally, you can learn new coping skills, build on current ones, and develop resilience.

We also know that a JDM diagnosis affects all family members, and you will find resources for them here, too.

According to a 2017 article by pediatric rheumatologists Alaina Davis, Tamar Rubinstein, Andrea Knight, and Martha Rodriguez, “beyond the long-established detrimental impact that chronic disease has on an individual’s mental health, we now appreciate that the relationship between chronic physical disease and mental illness is bidirectional.” 1

To understand how our JM families cope with mental health, we collaborated with Andrea Knight, MD, MSCE, an autoimmune and mental health expert. 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. 2

Click here to join other JM parents/caregivers on Facebook.


Susan Shenoi, MBBS, MS, RhMSUS
Associate Professor
Clinical Director- Pediatric Rheumatology
Myositis Center of Excellence
Seattle Children’s Hospital and Research Center

“Juvenile Myositis, like other chronic rheumatologic diseases, can affect the child and extended family, including parents and siblings, in many ways. We see a lot of patients with myositis grapple with the emotional or mental health aspects of chronic illness. Parents, caregivers, and families may need emotional or mental health support to care for their loved ones with a chronic illnesses.

From the beginning of diagnosis, we want patients and families to understand that it is normal to have a range of feelings and that emotional health is as important as physical health. Cure JM has made it part of its mission to advocate for these patients’ and families mental health needs by providing resources and support. I am grateful for their commitment to finding better treatments for juvenile myositis and supporting the mental health needs of these patients and families.”

Vamorolone FAQ

Vamorolone FAQs in JM

With the looming FDA approval of the drug vamorolone in Duchenne muscular dystrophy, there are questions surrounding the drug’s status for trials in juvenile myositis. We have consulted with JM experts on the potential implications of a pending approval for the drug in another disease and what this currently means for JM patients living in the U.S.

Cadence’s Story

Cadence was only 18 months old when she was diagnosed with juvenile dermatomyositis. Her mother took her to their pediatrician’s office multiple times, only for

Shevlin & Smiddy Families Unite to Build Community

One such alliance in the Seattle area is that of the Shevlin and Smiddy families. These two families have come together to host community events that make Cure JM’s crucial work possible. Their approach has been to keep it simple with a “yard sale” yet, the event has become a staple in their community and a way for JM and families and friends to stay connected year after year.

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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