Even though symptoms of Orthostatic Intolerance (OI) are commonly reported among people with connective tissue diseases, only a portion of those individuals will test positive for POTS, OH or another form of Dysautonomia. If heart rate or blood pressure don’t change “enough” during testing, too often, the investigation ends there, and the person may be dismissed without answers or treatment options.
Here’s the thing, though. Research has already shown that people who have other conditions — like Long Covid or ME/CFS along with orthostatic symptoms — experience significant drops in Cerebral Blood Flow (CBF) during upright postures, even when their heart rate and blood pressure do not change.
What if a Flow Drop might be happening in people diagnosed with one of the Ehlers-Danlos Syndromes, HSD, Marfan, Loeys-Dietz, or other connective tissue conditions, who are also experiencing OI symptoms?
Today, this is only a hypothesis. But we are hoping to investigate this question in a way that only Lumia™ can, in the field — and if you’ll be at the EDS conference, I’d like YOU to be a part of it!
Hundreds of people with these diagnoses will gather in person this July 17-21 in Philadelphia for the Ehlers-Danlos Society’s Global Learning Conference. Our team will attempt to gather as many Active Stand Tests (to check your body's blood flow response to gravity) as we can, with Lumia devices that track blood flow to your head. We hope to include a high number of participants to increase the power of this exploration, so that whatever is discovered will have significance.
Share this info with your Dazzle! We hope to include people with and without a diagnosis of an orthostatic syndrome. This brief stand test will be a “come as you are” field test meaning you would continue all your normal treatments and need no special preparation.
With your willingness to stand up for Zebras, could we transform what is known about these conditions? What will be the ripple effect for future research?
We are the ones we have been waiting for.
-Shivani
