01 Dysauto-whatta?! w/ Lauren Stiles (episode page)
Description: Lauren talks about her long diagnostic process, misdiagnoses, diagnostic delay, and gives us a crash course on just what dysautonomia is. She is the president of Dysautonomia International, a nonprofit she started in 2012, which has gone on to raise considerable funds for research in a neglected field, and hosts an annual patient-centered conference that doesn’t follow any rules. We talk about that research and the conference, and how exciting it is to get in a room with 400 other people who get it, don’t think you’re crazy, and might even share their Gatorade with you. Lauren lives with Sjogren’s Syndrome and dysautonomia that includes Postural Orthostatic Tachycardia Syndrome, Inappropriate Sinus Tachycardia, and Neurocardiogenic Syncope.
I want to welcome you to the first real episode of In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
This podcast or any of its associated content does not constitute medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. This podcast will be about telling our patient stories, and talking about important issues related to health. If you want to know why I think these topics are so important, go back and listen to our episode, “Welcome to In Sickness + In Health.” I explain why I started the podcast, what I’ve learned along the way, and what I hope the show will be.
We’re all going through this together, but I can't stress enough how different we all are, even if we were to have identical medical files. There are so many factors that go into shaping a person's experience of health and illness. Just because something worked for one person does not mean it will work for you or anyone else. I want to ask my audience to respect the very personal decisions of my guests, and remember that the choices of others do not affect or reflect anything onto their own choices.
[Lauren’s origin story]
That’s Lauren Stiles, she is a lawyer from New York who lives with the autoimmune disease, Sjogren’s Syndrome, and dysautonomia that includes POTS, IST, and NCS. She also happens to be the president of Dysautonomia International, non-profit founded in 2012 by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.
I hope I haven't already lost you with the big, weird words. You may have never heard of Sjogrens, and probably have never heard of dysautonomia, or it’s various forms. That’s okay! A lot of people haven’t. Put simply, dysautonomia is a dysfunction of the Autonomic Nervous system, that’s the part that’s responsible for all the automatic things that are supposed to happen in your body. It controls thinks like your heart rate, blood pressure, body temperature, and many other things. If you hear people talking about your ‘fight or flight’ response, they’re talking about your Autonomic Nervous System. Lauren’s going to explain about all that soon, but first, I want to tell you about why I made these first few episodes about dysautonomia.
I’m launching the show with a series of episodes that include interviews with dysautonomia patients to honor Dysautonomia Awareness Month. The month of October is one for awareness fatigue, I know that. I’m sure you already know it’s breast cancer awareness month, but did you know it’s also the awareness month for Down Syndrome, Spina Bifida, and Domestic Violence? Then there’s the awareness weeks for Invisible Illness, Becker Muscular Dystrophy, and Mental Illness. October 15th is Pregnancy & Infant Loss Awareness Day. I know, I’m already sad and exhausted too. I even left a few out. All of these are important issues, and all of them need more research and funding and understanding, but a lot of the awareness campaigns often leave us feeling like not much has been accomplished. They don’t generally further a better understanding of the issues or the unique challenges they can present to individuals, but I’m hoping with the podcast, that’s something we CAN do.
Dysautonomia International’s slogan for the Dysautonomia Awareness Month is "Make Some Noise for Turquoise," so that’s exactly what we’re doing with the podcast. As the show goes on, I plan to feature a wide variety of health experiences, and hope to have voices that can speak to all the causes I just mentioned. But dysautonomia is personal for me. It affects me every single day, and has for most of my life, so I wanted to kick off the show with a series of interviews about something very close to my heart.
So now I’m going to let Lauren explain a little more about what exactly dysautonomia is. If you already know all about it and what to skip to the rest of her interview, you can jump to XX:XX, but if you take a listen, you may learn something new! You’ll have to forgive the sound quality. We recorded at Lauren’s mother in law’s house while the family was making dinner, and then finished the interview outside after dinner, to the tune of late summer New York cicadas.
[Lauren goes through definitions of primary dysautonomias]
I like to describe POTS as the wedding crasher of the dysautonomias. It likes to show up to parties it’s not invited to, so like Lauren pointed out in the earlier clip, it can show up in the setting of genetic conditions, immune dysfunction, and neurological disease. Like many POTS patients, I have it thanks to a genetic condition called Ehlers-Danlos Syndrome, which if you stay tuned to the podcast, I’m sure you’ll learn all about.
[introduces secondary dysautonomias like diabetic autonomic neuropathy]
There are a ton of diseases associated with secondary dysautonomias. For example, research shows that 30-60% of MS patients have some amount of secondary autonomic dysfunction, usually related to blood pressure dysregulation and bladder control iss tell your ues. Newer research is increasingly showing a link between dysautonomia other autoimmune disseases, like Sjogren’s, Crohn's and Rheumatoid Arthritis, as well. As Lauren put it:
[it’s hard to find a disease that doesn’t involve the autonomic nervous system to some degree, but because we haven’t been able to measure it very well, those links remain under investigated. and why autonomic dysfunction is studied so little.]
So now that we have our definitions out of the way, I like to ask everyone about how their family deals with illness, and how they think their cultural background might have influenced those attitudes.
[family and cultural attitudes]
It was at this point in the interview we stopped to eat dinner, and then went outside to finish recording…
[diagnosis and diagnostic delay]
One of the things that I want to do with this podcast is highlight the incredible diversity of advocacy that is happening within patient communities. Patients are reaching out within their own disease communities to raise awareness and support, both for their conditions, and for chronic health conditions in general. Lauren went a more traditional route with starting a non profit organization, but Dysautonomia International has accomplished so much in the three years since its inception, so I asked Lauren talk a little bit about what they have been able to do with it.
[Dysautonomia International talk, research studies]
As you might be able to tell, we were both pretty tired by this point and completely forgot to talk about the POTS antibodies research that Dysautonomia International has been able to fund. After finding evidence of a specific type of autoantibodies in a small group of POTS patients, researchers are further investigating a possible autoimmune basis for POTS. This research is exciting because it may lead to a possible biomarker for diagnosing POTS. We know it’s real, but having this kind of diagnostic test would help reinforce its legitimacy for those who remain skeptical. If the condition does turn out to have an autoimmune basis, it opens the door for possible targeted treatments as well. After finding antibodies in a small number of patients, researchers are now looking at a larger number of patients with the help of Dysautonomia International. They have used their annual conference as an opportunity to collect samples for use in the larger study.
[talk about DI conference, what she would say to someone recently diagnosed]
That does it for the first episode of In Sickness + In Health. Subscribe and stay tuned for everything we have to come, and keep an eye on your podcast feeds or our website for the other episodes in this series celebrating Dysautonomia Awareness Month! We’re posting a new one every day this week, and we can’t wait to hear your feedback. Please rate and review us on iTunes, which helps other people find the show, and tell your family, tell your friends, and tell your doctors!
But most importantly, don’t forget to be excellent to yourselves and each other.