The Loneliness We Don’t Talk About
By Ronda Thorington, MA, LCP Summary:In rare disease caregiving, loneliness often hides in plain sight between appointments, responsibilities, and the need to stay strong. This month, we name it and explore gentle ways caregivers can feel less alone. There are many themes that play on repeat when caring for a child with Juvenile Myositis: frustration, […]
Finding Calm in the Holiday Chaos: Managing Stress as a Caregiver
The holidays are often pictured as joyful and peaceful with images of glowing lights, cozy mornings, and laughter around a table. But for many families, the season brings a different kind of challenge. Between unpredictable flares, travel worries, medical routines, and emotional exhaustion, “holiday stress” can feel like an understatement. Last year, I had imagined […]
The Best Present Is Your Presence: How to Set Limits This Season
The holidays are often described as the most wonderful time of the year; often full of warmth, family, and togetherness. But for caregivers, the season can also bring a unique kind of exhaustion. We’re already managing the physical fatigue of managing appointments, medications, and flares. Now add to that the emotional strain of trying to meet everyone’s […]
The Signs We Don’t Always See: Recognizing Emotional Distress and Finding Support
Living with Juvenile Myositis means becoming an expert in change. Cure JM parents and caregivers learn to track labs, watch for weakness, manage medications, and anticipate flares. We know when something is off physically. What can be harder to notice, but just as important, are the emotional shifts that happen over time in our children, siblings, and […]
July 2025 Town Hall – Managing Anxiety & Promoting Wellbeing for JM Patients and Parents
Join us for this powerful Town Hall featuring Dr. Aviya Levy, a nationally recognized pediatric rheumatologist and mental health advocate, as she explores practical strategies for managing anxiety and promoting emotional well-being in children with JM and their caregivers. Drawing on her expertise in narrative medicine and her work at the forefront of JM mental […]
Talking Through the Tough Stuff
Parenting requires a lot from us: love, patience, sacrifice, and resilience, to name a few. Add to that the moments when we must sit with our children and talk through friendship drama, family conflict, frightening things happening in the world, or even their changing bodies. Just thinking about those conversations can leave a pit in […]
Mental and Emotional Health FAQ for Caregivers
Why is emotional/mental health important to our JM kids? Where can I find out more about mental health issues for our JM kids? Where can I learn more about how JM influences anxiety and depression? Where can I learn more about the signs of anxiety and depression in kids and teens? Where can I get […]
Resources for Emotional and Mental Health
Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents.
Emotional and Mental Health: Getting Help
There are resources available for mental health care though it can take awhile to research them, access them, and follow up on the care.
Impact of Juvenile Myositis on Mental Health
Drs. Kaveh Ardalan, Andrea Knight and Alison Manning discuss juvenile myositis’ impact on mental health.
Emotional and Mental Health Resources: Teens and Young Adults
Besides the normal turmoil of adolescence, having a diagnosis of juvenile myositis can present you with more stress due to changes in body image, medical visits, medicines, etc.
Emotional and Mental Health: General Resources
In order to understand how our families cope with mental health, we collaborated with Andrea Knight MD MSCE, an expert in the autoimmune and mental health fields.
Signs of Depression and Anxiety in Children and Teens
Kids with JDM experience depression and anxiety at 2-3 times a higher rate than their peers. We hope that by outlining the common signs and symptoms of depression and anxiety, you are better able to support your children.
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.
Resources for Patients Who Have Pain
Here are some resources and recommendations for ways of addressing pain. These come from pediatric rheumatologists and other medical providers/researchers.
Emotional and Mental Health Resources for Experienced Parents and Caregivers
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.