By definition, a rare disease affects a very small percentage of the population. Juvenile myositis certainly fits that criteria, impacting approximately 1 in 500,000 children. For the general population, that number may seem small. But for those of us living this life, it can feel all too common.
There are experiences within pediatric rheumatologic disease that many families share, and anxiety is one of them.
Research shows that 15-40% of children diagnosed with rheumatologic disease experience mental health symptoms including anxiety and/or depression. Yet despite how common this is, very few clinicians are specifically trained to address the complex overlap between the physical manifestation of disease and mental health in medically complex children. Families are left trying to navigate uncertainty, fear, treatment burden, and emotional exhaustion with limited support and even fewer practical tools.
And even when mental health resources are available, they often come at a cost: another appointment, another provider, another reminder to a child that they are different from everyone else. Rare pediatric rheumatologic conditions create a perfect storm for anxiety: medical trauma, unpredictable flares, painful procedures, missed school, social isolation, fear of the future, and uncertainty that often extends far beyond childhood. In many ways, anxiety becomes the norm.
Then along came SPACE.
This approach acknowledges that reality, while at the same time, giving families practical tools to manage it without placing more burden on the child.
SPACE (Supportive Parenting for Anxious Childhood Emotions) is a treatment model developed by Dr. Eli Lebowitz, Associate Professor at Yale University and Co-Director of the Anxiety Program at the Yale Child Study Center. Research has shown SPACE to be as effective as Cognitive Behavioral Therapy, long considered the gold standard for the treatment of childhood anxiety. While CBT can be incredibly beneficial, it also comes with inherent challenges for medically complex families: multiple appointments, extensive skills practice, and one more responsibility for parents already taxed with overwhelming demands.
What makes SPACE so unique, and so promising for pediatric rare disease communities, is that the child is not the one receiving treatment. The work is done entirely with parents.
Instead of focusing on “fixing” the child, SPACE helps parents learn how to respond to anxiety in ways that communicate confidence, safety, and belief in their child’s ability to cope. Parents learn to recognize patterns of accommodation that may unintentionally reinforce anxiety and replace them with supportive responses that build resilience over time.
As both a therapist and a parent of a child with a rare disease, this feels like a game-changer.
It also aligns with what so many rare disease families are already trying to do: protect their child while simultaneously helping them live as fully and independently as possible.
In April, Dr. Lebowitz presented the SPACE model during two Cure JM events: one for clinicians and another for parents. The clinician session was a virtual standing-room-only event, reflecting the growing recognition that mental health support must become part of comprehensive pediatric rheumatology care. The parent town hall that followed was filled with families eager for concrete, manageable strategies to support children struggling with anxiety in the context of chronic illness.
What stood out most was the sense of hope in the room.
Not false hope. Not a minimizing of the realities of rare disease parenting. But the kind of hope that emerges when clinicians are equipped with realistic, evidence-based resources and families are finally given tools that are practical, compassionate, and achievable in real life.
Mental health support for children with rare disease cannot remain an afterthought. It must become part of how we care for the whole child and the whole family. Models like SPACE remind us that supporting emotional health does not always require adding more to a child’s plate. Sometimes it means equipping the people already in their world.
By: Ronda Thorington, MA, LPC
If you are curious about SPACE, click the links below.