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.”

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.

A Grandparent Spotlight – Anita

Cure JM recently had the pleasure of interviewing a remarkable individual who hails from Canton, Ohio, and brings a wealth of experience and love to her family. With a vibrant history spanning over five decades of marriage, three daughters, and a rich tapestry of grandchildren and great-grandchildren, Anita Mottice’s journey is as inspiring as it is heartwarming. As a retired nurse and devoted wife, Anita shares her profound connection with her family, particularly her grandchild Sydney, who has been diagnosed with Juvenile Myositis (JM).

GCOM 2024 Round Up

Recently, Cure JM’s Jim Minow was able to attend the Global Conference for Myositis. This conference was not only informational, but was a most impressive day for Cure JM. The conference brings together leading myositis researchers from around the world to share results and collaborate on future projects leading to better care and improved treatments for our JM kids.

Join Cure JM

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

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