When the Nervous System Speaks Before the Brain Does
Autonomic dysfunction, Alzheimer’s disease, and the early signals we have not yet learned to hear. This is Blog 2 of The Dysautonomia Journey — a fully referenced series following the autonomic dysfunction patient from their first clinical encounter to the structural patterns of the system that shapes their journey. Start with the Series Introduction if […]
Beyond POTS: Understanding the Full Spectrum of Dysautonomia
The condition is larger than its most famous name. Here is what medicine is missing This is Blog 1 of The Dysautonomia Journey — a fully referenced series following the autonomic dysfunction patient from their first clinical encounter to the structural patterns of the system that shapes their journey. Start with the Series Introduction if […]
The Invisible Struggle: Living with hEDS, POTS & MCAS
Living with hEDS, POTS, and MCAS can feel overwhelming and invisible. Learn how these conditions overlap—and how ConnectED helps make sense of it all.
hEDS Phenotypes Explained: 5 Patterns of Symptoms in Hypermobile EDS
Hypermobile Ehlers-Danlos Syndrome can affect the body in different ways. Learn the five proposed hEDS phenotypes and how symptom patterns may help explain your experience.
How the ConnectED App Helps Make Invisible Symptoms Visible
The ConnectED App helps people with hEDS, POTS, and MCAS turn invisible symptoms into structured insights for better care and understanding.
When “Normal” Blood Tests Aren’t Enough: Why Patient-Led Testing Matters for hEDS, POTS & MCAS
Patient-led testing works best when it’s intentional, not random. For people living with hEDS, POTS and MCAS, symptoms fluctuate, and standard testing often misses the window where meaningful changes are happening.
Hope in Action: Contributing to the Future of Hypermobile Ehlers-Danlos Syndrome (hEDS) Care
Last year, I took part in a research study exploring the design of a digital pain management program for people with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD).
Hypermobile Ehlers-Danlos Syndrome Misdiagnosis Explained
If you’ve experienced Hypermobile Ehlers-Danlos Syndrome misdiagnosis—hearing “Have you considered that it might be anxiety?” while battling
10 Signs of Hypermobile Ehlers Danlos Syndrome
Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common form of EDS, but it’s also the most underdiagnosed. Because symptoms vary widely and often seem unrelated
The Invisible Struggle with hEDS, POTS & MCAS
Living with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS) can feel like fighting a battle no one else can see.