Inflamed Brain Alliance (IBA) was borne of thousands of excruciating stories of families across Canada tormented by a largely misunderstood and misdiagnosed disease.
This is one story. On June 9, 2013, Richard and Marnie Deschenes never imagined their once sweet, joyful, and carefree son would change in an instant… for no understandable reason. He became withdrawn — a recluse, terrified to face the outside world.
Admittedly there may have been hints of obscure warning signs, but nothing could have prepared them for the profound dysfunction and trauma that was to come. Their son quickly became a shell of who he once was… and his life-light disappeared from his eyes.
Not Standard OCD
When they discovered through the school nurse their child could have PANDAS, and not standard OCD, they grappled with this suggestion as they were unfamiliar with the medical diagnosis. Shockingly, their child’s symptoms matched the criteria and they would finally have some answers.
However, little did they know, the answers would be so evasive. There were few health providers trained to query this unconventional condition where immune system dysfunction causes neurologic and psychiatric symptoms. Not finding help was despairing for the Deschenes’ and they feared others were also falling through the same cracks in the medical system.
For the next three plus years, while the Deschenes’ fiercely searched to find medical support, their son’s physical and mental health spiraled. Professionals speculated as to the cause of his myriad of symptoms, unable to provide a clear diagnosis. Adding more trauma to the situation, their youngest son would also develop the same condition.
Guided with Patience and Empathy
Thanks to the Deschenes family’s circle of support, they made it through this excruciating time. Their silent heroes were the veteran PANS PANDAS parents, doctors that diagnosed and treated, therapists that validated their experiences, teachers that guided with patience, flexibility and empathy, and friends & family that “in for the long haul.”
The Deschenes’ have a deep concern about the complex challenges and obstacles for those living with PANS PANDAS (and their families). They know the desperation beleaguered families experience when relentlessly searching for support, but come up empty-handed.
Channelling their painful experiences into purpose, in 2020 they resolved to begin closing a large medical PANS PANDAS gap by bringing together a small group of change makers to launch IBA as a federally incorporated not-for-profit. On April 1, 2022, Inflamed Brain Alliance met the requirements for tax-exempt status as a registered Canadian charity.
Creating Community of Belonging
One of IBA’s fundamental values is to nurture an intentional community where unique health journeys are honored through opportunities for healing, connection, learning, and giving back. We invite patients and their support networks – family, friends, educators, health providers, and researchers to join our caring community.
We’ll offer free storytelling therapy (Healing Stories), and eLearning (Healing Insights) programs. We’ll also offer creative ways to support our research program (Healing Discoveries) aimed at improving time to diagnosis and developing pathways to clinical care. Together we will ‘bring health to mind’.