What Two New Studies Say About the Head, Neck, and hEDS People with Ehlers-Danlos syndrome have heard for years that their symptoms are “in their head.” In one sense, that may be true—but not in the way we all hate to hear. When it comes to symptoms like headaches, nausea, dizziness, brain fog, visual disturbances, […]
A new study, led by Dr. Cortney Gensemer, marks a genetic breakthrough in hEDS research. The KLK15 variant (p.Gly226Asp) has been identified as a direct disease-causing gene in hypermobile EDS, causing connective tissue dysfunction and immune system dysregulation.
Most people living with Ehlers-Danlos syndrome (EDS) are used to a long and straining path to diagnosis, full of prejudice and gaslighting. Davina Brigant knows this journey all too well. “As far as I remember, during my childhood, I always had some problems. I was very flexible. People always told me that about myself, because […]
Lead author Dr. Pradeep Chopra, a pain specialist located in Rhode Island, who has treated EDS patients for decades, shared the motivations behind the study: “I was seeing patients with EDS and almost all of them had gone through bad experiences of being misdiagnosed, misguided, and misjudged by the medical community. In 2010, I decided […]
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