Update 012320

I had a podiatrist appointment today. The podiatrist is amazing. I am so grateful for his compassion and how completely through he is. I wish more doctors were like this. Everything about his approach is completely validating which is so refreshing. As I look towards becoming an FNP, this man is my role model. This is the kind of provider that I want to be. This is the kind of patient experience I want every patient in my care to have.

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Autonomic Dysfunction

This is startling. Only 20% of EDS-H patient’s had normal testing for the autonomic nervous system. 80% with autonomic dysfunction (postural orthostatic tachycardia syndrome or orthostatic intolerance). That is huge.

When I think about it, this makes sense to me, but I really didn’t expect the numbers to be this high. Given that we have lax blood vessels that easily allow blood to pool in places and ways that it isn’t supposed to, it makes sense that it would be difficult for our bodies to regulate our blood pressure and pulses in different positions.

Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome, Hypermobility Type: Neurovegetative Dysregulation or Autonomic Failure?