EDS, MCAS & Dysautonomia: Autoimmunity Triggers & Brain Retraining with Dr. Ina Stephens | Ep 217

SPEAKER_1 (0:01)

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Dr. Ina Stephens (0:30)

You may have been exposed and you were asymptomatic, and you may have been recently exposed. I look for, you know, persistent infections, just not necessarily am I able to treat them, but potentially I can find an answer.

Dr. Linda Bluestein (1:00)

Welcome back to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, The Hypermobility MD, a Mayo Clinic trained expert in Ehlers-Danlos syndromes. Today, I'm going to be having another conversation with my friend and colleague, Dr. Ina Stephens. We are going to be talking about autoimmune disorders and autoimmune causes of autonomic nervous system dysfunction. We will be talking about nutritional deficiencies, fluoroquinolones, and so much more. Dr. Stephens is the Associate Director of the UVA Health EDS and Hypermobility Disorders Center. We are so proud to partner with the UVA Health EDS Center to bring you conversations that connect cutting-edge science with practical, compassionate care for our community. This podcast is for education only and is not a substitute for personalized medical advice. Stay to the end for a hypermobility hack. Here we go.

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Hi, everyone. Thanks for tuning in. We had a slight technical glitch with my camera feed today, but the audio recorded just fine. A static image will take over whenever I'm speaking for the remainder of the episode. We appreciate your patience and enjoy the show.

Well, I'm so excited to be back with my friend and colleague, Dr. Ina Stephens. How are you today?

Dr. Ina Stephens (2:43)

I'm doing really well, Linda. So good to be here again. Thank you. Thanks for having us.

Dr. Linda Bluestein (2:48)

Yes. I just love getting to talk with you.

We got some great questions that I want to dig into today. I love being able to do these deeper dives with you. I don't know if we're going to get through one question or three questions. It'll be interesting to see how this goes. The first question is from Stefna. She says, I know that you have covered that it is not clear what causes hypermobile EDS. I'm really wondering why there is such a huge increase or apparent increase in women and children with hypermobile EDS and Mass Cell Activation Syndrome in the past few years. Could there be environmental things leading to the increase in autoimmune connective tissue dysfunction and how helpful are programs like Primal Trust or other brain retraining and nervous system regulation programs? I recently met a woman who also has hypermobile EDS. Her opinion is that it stems from trauma alone. Thank you so much. I enjoy learning from you.

This is a multi-part question, right?

Dr. Ina Stephens (3:44)

I was just going to say that this is multi-factorial question here. I have a lot of things to say about all of these. Let's hit it one at a time. I think the first real question that was asked is, are we seeing an increase incidence of EDS, HEADS, HSD? I am going to challenge that and say, I don't think that we are seeing increased incidence and or prevalence. I think that we're seeing a very big increased recognition of this and awareness, a whole awareness. I say that for a lot of reasons. I mean, there have been studies to show this, that there is a recent prevalence study that came out that showed that HEADS thought to be the zebra disease for years. You're never going to see this. Don't think about it. That's why we saw one page about this in a textbook in medical school. It's very, very untrue. This is much higher prevalence than we actually think and many more people have it. I just don't think it was recognized. I think in the past, these people have been maybe given different diagnoses, maybe labeled something else, maybe not recognized, maybe not even brought to attention. With increased awareness from the medical community, which I do think that there has been an increase in awareness, although we talked about a couple of weeks ago that we still need a lot of education, but I do think that there's been an increased awareness. I think that the Internet and social media has really brought these patients to the forefront of they need to be heard, they need to be validated, and something's going on that please figure out what's going on.