Faces of Dysautonomia
Behind every diagnosis is a human story—one of strength, resilience, and the fight to be seen. These are the voices of children, teens, and families living with autonomic disorders. Their experiences reveal the gaps in care, the power of community, and the urgent need for change. We share their stories to raise awareness, foster empathy, and inspire action.
Cole's Story
A Shot a Healing
True Story: Cole has POTS (Postural Tachycardia Syndrome) and struggles to find help, becoming disabled by it. Pediatric providers kept telling him it was all in his head. But once he found knowledgeable care providers who knew what to do, he found healing.
Ally's Story
Positively Ally
Ally has Ehlers-Danlos Syndrome, Hypermobile type, and suffers from related conditions such as Postural Orthostatic Tachycardia Syndrome (POTS), chronic pain, spontaneous intracranial hypotension (SIH), and several abdominal compression syndromes.
 After receiving an accurate diagnosis from the Mayo Clinic, including hypermobile Ehlers-Danlos Syndrome (hEDS), she faced significant challenges upon returning home. Despite consulting with over 70 physicians, she found herself relying on a recumbent wheelchair because her local doctors lacked the necessary knowledge to help her.
A Cry for Help
3 Patients tell their stories of their experiences living with Dysautonomia along additional health issues.Â
Be the Difference They Deserve
Your donation fuels life-changing research, education, and support for kids facing complex autonomic disorders. With your help, we can close the gap in care by educating doctors, give families answers, and ensure no child walks this path alone. Every gift moves us one step closer to a future filled with hope and healing.