We sat down with Lauren Stiles, the founder of Dysautonomia International, to learn about why dysautonomia is so often misdiagnosed, what’s changing, and the role of hydration in helping patients.
What is dysautonomia?
Dysautonomia is a group of neurological disorders that impact the autonomic nervous system.
Why did you start Dysautonomia International?
In 2012, I had just gone through a difficult 2-year misdiagnosis. I was bedridden the whole time, and I had such a hard time finding a doctor who knew how to help me. After I was diagnosed, I joined online support groups, and I found thousands of other people who had gone through the same difficult misdiagnosis, or worse. I thought, “We have to change this.”
I knew that the only way we were going to make change was through physician education, research, and rallying our patient community together, so we started Dysautonomia International in 2012.
How many people in the U.S. are diagnosed with forms of dysautonomia?
We don’t really have clear statistics. We know that there are over 70 million people worldwide that live with different forms of dysautonomia. The estimate on POTS (one of the most common forms of dysautonomia) is that it impacts 1-3 million Americans. That’s roughly 1% of the population. The Mayo Clinic has estimated that POTS impacts 1 out of 100 adolescents, and roughly half of POTS patients develop it in adulthood.
POTS is a very common form of dysautonomia. Can you explain what POTS is, and what happens in the body of a POTS patient?
Check out our video!
Why is dysautonomia so often misdiagnosed?
Physicians generally receive very little training on the autonomic nervous system (ANS) as a whole, and even less training on what happens when the ANS doesn’t work properly. We’re lucky if doctors get one day on autonomic neurology in medical school. I sat in on those courses at some very reputable medical schools, and they learn the “dysautonomia 101” that most patients learn on the first day they are diagnosed. There are even a lot of neurologists who go through neurology fellowships and don’t actually receive training on autonomic nerve disorders. It’s not up to par. We need to improve physician education on ANS disorders.
Additionally, there are less than 50 doctors that are board-certified in autonomic disorders in the entire U.S., and there are very few autonomic neurology clinics that specialize in autonomic disorders. I know ALL of the autonomic neurologists, and that’s not good. If I was an MS advocate, I wouldn’t know every MS neurologist– there are thousands of them. That’s part of why we started this organization. We need to change that.
How can POTS affect a person’s life?
POTS patients can have a lot of different symptoms like abnormal heart rate, abnormal blood pressure, lightheadedness, fainting, gastrointestinal dysmotility, temperature regulation problems and much more. That said, people with POTS have a wide range of disability. Some are bedridden despite trying all the treatments available. Other are able to run 5ks. About half of people with POTS in college drop out of college. About 25% of patients can’t work, or can’t go to school. A lot of POTS patients were once really exceptional athletes. We have seen Olympians develop POTS overnight. When your whole career has been being an athletic person, and suddenly you can’t get out of bed, it’s really a shock.
Mayo Clinic research has shown that POTS patients experience a disability similar to what is seen in COPD and congestive heart failure. Those are two conditions that medicine takes very seriously, because they are debilitating. Researchers have compared POTS patients’ quality of life to the quality of life seen in end-stage renal disease—kidney failure.
How can proper hydration help people with POTS?
Research has shown that most people with POTS have low blood volume. They’re not dehydrated—they actually have low plasma volume and low red blood cells. This is due to a problem with their regulatory mechanisms that control blood volume. One of the best ways to increase your blood volume is to increase your salt and fluid intake, which supplements the missing plasma volume. You can increase the red blood cell volume by engaging in regular exercise – which is really hard when you have POTS. By increasing your plasma and red blood cell volume, you can reduce some of the symptoms that occur with standing up in POTS —the lightheadedness, the fatigue, the brain fog and more.
Why was Liquid I.V. a good fit to be a sponsor for Dysautonomia International?
Liquid I.V. is a great choice for us to partner with because they make a great hydration product, and people like the taste. POTS patients are advised by their doctors to drink 2-3 liters a day of hydrating fluids, and an average of about 8 grams of salt per day, so oral hydration products can help them achieve those treatment goals. Plus it’s easier to reach those goals when they’re drinking something that tastes good.
POTS is called “the invisible illness”—why is it called that?
I actually don’t like calling it the “invisible illness.” If you’re a smart doctor, you can see the physical signs of it pretty easily. You just have to know what you’re looking for. We refer to POTS as “the most common medical condition you’ve never heard of.” More than half of POTS patients have purple legs when they stand up. Many patients also develop red flushing on the upper half of their body, or swelling in their legs after prolonged standing.
How easy or difficult is it to spread awareness about POTS?
Our patient community is amazing at raising awareness. I hear from parents who end up talking to strangers at the grocery store about it! We’re all out there “making noise for turquoise,” as we say. It’s harder to get physicians to learn about it, but once they do take the time to learn a little bit, they often take an interest in it. It sounds weird to say this, but POTS is a fascinating illness that affects so many different bodily systems. Once you get a doctor to realize what it is, then they realize they’ve had a lot of these patients for years and they just didn’t know what to call it.
How are things changing for POTS patients? What research is being done?
Awareness is increasing. It’s definitely better now than it was 10 years ago. We’re seeing more research than ever before, centered around trying to understand the underlying mechanisms of POTS. Dysautonomia International has played a really important role in that, with our donors supporting our POTS Research Fund. We’ve been able to fund over 1.5 million dollars in POTS research at many of the top universities. We’re finding immunological markers, genetic markers, new neuropathology findings and studying new treatments. It feels like we’re on the edge of something really important – a big breakthrough. The more we understand about the mechanisms of POTS, the better treatment we can bring to patients.
Thank you for sitting down with us, Lauren!