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.”

Executive Director Update - A Season of Gratitude

Season of Gratitude

I am writing to wish you and your family the very best this Holiday Season. This time of year, especially, I am filled with deep appreciation for all that Cure JM families have accomplished to advance our mission, to improve the lives of children living with JM, and to support the doctors and researchers driving better treatments as we fight for a cure.

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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

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