Episode 81: Carter Hemion - EDS & MCAS

Carter lives with multiple conditions, and this episode is focused on two of them: Ehlers-Danlos Syndrome (EDS) and Mast Cell Activation Syndrome (MCAS). Carter’s story is one of quiet endurance, misdiagnosis, rediscovery, and ultimately purpose.

Born with classical EDS caused by a collagen gene variant, Carter spent two decades sensing “something wasn’t quite right” before receiving a diagnosis. Years of chronic pain, joint instability, GI issues, and nerve problems were compounded by mast cell symptoms that mimicked psychiatric illness – hallucinations, mood swings, anxiety.

We discuss the profound shift after Carter’s diagnosis and receiving the right treatment for MCAS: clearer thinking, emotional stability, and physical relief. Deeper than the physical symptoms, Carter speaks with wisdom about reclaiming selfhood and finding peace. He also reflects on discovering a community who understands him, and finding a purpose in advocacy.

Carter’s reflections on resilience, stigma in healthcare, identity, and hope are thoughtful and deeply human.

The song that he chose is Standing Outside the Fire by Garth Brooks.